Special Needs Parenting

Check out the latest articles from the Messy Bun Life on special needs parenting. We hope you’ll find some tips, tricks, support and more on your journey as a special needs parent.

10 Tips for Taking Your Autistic Child To Disney World

August 12, 2019 By Laura Epstein

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.

It’s time to go on vacation! And what a fun place Disney World is to go. Our oldest son Ross has autism and we have had several successful trips to Walt Disney World with him and his brothers. We have learned a few things along the way and I hope you will find some of these tips and tricks helpful as you plan your trip.

Prepare, Prepare, Prepare

That may be the motto of every parent of a child with autism. The more you can prepare yourself and your child for your trip the better. One of my biggest concerns with my son was getting through the airport. Our therapists prepared a visual schedule that walked Ross through the airport including potential pitfalls like putting his beloved stuffed panda bear on the conveyor belt to be screened. We also looked at pictures of the hotel and bus to the hotel ahead of time so the Ross would know what it looked like.

In addition we spent a lot of time researching which attractions he would probably like. While we let him and his brothers pick where they wanted to go we guided their choices knowing which attractions were the most likely to be successful. We used the Unofficial Guide to Walt Disney World and Disney World’s Attraction Details for Guests with Cognitive Disabilities to help us sort through the plethora of attractions at WDW. This second guide is a chart that shows the length of a ride, element of surprise and various other features. It is incredibly helpful to picking rides if you are new to the park. Disney World also has a planning guide with lots of tips for planning your trip as well.

Calm and Regulate

Travelling can cause dysregulation. Disney World can be loud and visually overstimulating. We brought noise cancelling headphones for Ross including a pair that hooked up to blue tooth (Worktunes) so that if he needed to totally escape he could watch a movie through the ear phones. These were awesome when he was just done and we were exiting the park or on the buses and monorail. We also used a stroller with a large hood, the City Mini, where he could essentially hide from the visual over-stimulation that Disney often is. Definitely also make sure to bring any other regulating tools such as fidgets and chewies that you usually use with you.

Keep Everything As Normal As Possible

This seems like a bit of an oxymoron for a vacation but the more that can stay the same as home the better. The first year we went to Disney we brought Ross’ stroller from home. The second time we rented the exact same model and prepped him that it might be a different color. Knowing that it would be his usual stroller was very calming to him. We also brought single serve milk boxes from home so that we were sure we could get his usual type, brought LEGOs that he loved and all our Captain Underpants books.

Get The Accommodations That You Need

Disney World offers a few great options for accommodations to help make your trip smoother. The first is the Disability Access Pass. Essentially instead of waiting in line you are able to check in at an attraction and get a return time. You can then return anytime at or after the return time. For us being able to return any time later in the day versus the two hour window of the Fast Pass was helpful in case Ross needed to take a break during the day. To get a disability access pass you go to Disney World Guest Relations and they will walk you through the process. The first time we went to Disney World I brought all our diagnostic paperwork but they never looked at it. It turns out the program is need based and not based on any particular diagnoses.

We have also used the stroller as wheelchair tags. It is helpful for Ross to stay in his stroller when he is starting to get overwhelmed or a little nervous and this tag allows the stroller to go wherever a wheelchair can. For going through the airport there is the TSA Cares program. We have not personally used it yet but those who have used the “walk through” program have found it very helpful.

Ask for Help

Disney cast members (what Disney calls all staff) can guide and help you and are always willing to do so. If your child needs to take a break from it all just ask and they will direct you to the nearest break spot (these are also listed here). Cast members can also assist in finding dietary options if your child has intolerances, allergies or other specialized needs. The can also sometimes bend the rules a bit. Our first trip we didn’t have a stroller as wheelchair tag (I didn’t know about it yet) but Ross couldn’t get out of his stroller due to anxiety at Chef Mickey’s. I asked at the check in desk and they were able to switch our table to one that was able to accomnodate his stroller.

Do NOT have FOMO

I’m saying this to you, the parent or caregiver. You are not missing out because you didn’t go on the newest ride and if you don’t tell your children how many characters or rides there are they won’t fear that they are missing out when they get tired and leave early. Disney World is hard because you have to balance being relaxed and go with the flow with also needing to be well scheduled both because of the needs of your child and the necessity of the Disney Fastpass system and reservations. Having FOMO (the fear of missing out on things) will not help you balance these already sometimes opposing needs.

Have a Plan B

Trips rarely go as planned. Disney World is no exception. Having a plan, or plans, in case your child turns out to be scared of Mickey Mouse (it happened to one of my twins the first time we went) or everyone is getting overheated is important. The same goes for knowing your exit strategy. When Ross is done for the day, he’s done. Sensory overload is not easy to overcome after a point and it is not worth pushing it for us. When that happened it was important to our family to know which parent would take him back to the hotel and for Ross to know too. We have two other children who also needed to know that plan.

Find Something Your Child Will Love, Even If It Is Off The Beaten Path, And Stick To It

Somewhere deep in a Disney chat room I heard about the Sorcerers of the Magic Kingdom attraction. You check in at the Magic Kingdom firehouse, get playing cards (that you can also collect) and a map, and are then sent on quest to find various “portals” throughout the Magic Kingdom and eventually defeat a Disney villain. It’s an amazing interactive treasure hunt full of Disney Magic. Ross loved it! He cared far more about finding the portals then going on Space Mountain or any other ride and although it wasn’t the “average” way to spend a good chunk of day at the Magic Kingdom it was tons of fun and it was great to see him engaged and excited. I read a blog post by someone whose autistic son only wanted to go on the Dumbo ride. While the parent was a little bored he said he was happy that his son found something he really liked about Disney World so they stuck with it. We did the same with Sorcerers of the Magic Kingdom. We searched all over the park for villains until it was time to go see Elena of Avalor, his other favorite!

Change Your Expectations

The first time we went to Disney Ross spent at least 75% of the time in the parks in his stroller. He engaged far less than I expected (at least in the traditional, neurotypical sense) and seemed far less enthusiastic then his younger brothers. But, he spent the next 12ish months talking about how great it was, telling stories and asking when we were going back. I had expected him to engage in a particular, more traditional way but he engaged and enjoyed it in his own way.

Also, from a caregiver perspective accept that you will likely come home far more exhausted than we left. I like to remind my husband (when he whines about vacation being tiring) that “it’s a trip not a vacation” for the parents sometimes. While Disney World is awesome there is a lot of work involved!

I hope you have an amazing trip to Disney World! I’d love to have you join our email list, and you’ll even get a free IEP worksheet when you join!

Back To School Essentials for Special Needs Children

July 17, 2019 By Laura Epstein

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 on one of these back to school essentials for special needs children. Thank you for supporting my blog

Getting ready for school is fun and exciting! It also involves lots of coordination and prep (IEPs, new teachers, etc) and of course, new supplies. Here are some of my favorite school essentials for special needs children.

Backpack

Backpacks are a little tricky with my autistic son. In preschool he became attached to a hand me down Thomas the tank backpack. The problem was it was a plastic, “cheap” backpack that already had a couple years of wear and tear on it. So pretty quickly it started to fall apart. Of course he was attached to it and having autism he struggles with change so we tried to sew it, tape it and do anything else to keep it functional. It made it through the year and he agreed to find a new one for the next school year but I learned my lesson if using cheap backpacks. We found him an awesome Pottery Barn Kids backpack with a panda (his favorite) on it. While it was expensive after two years it has shown very little wear and tear and I highly recommend getting a Pottery Barn or similar higher end backpack especially if your child struggles with change.

Basic School Supplies

Basic school supplies are, of course, dictated by what the school and teachers want. At my son’s school you have the option to buy a pack with most of the school supplies from the PTO (which I do because it’s readier) or purchase on your own from target, amazon, etc. One supply which was not included in the schoolpack were headphones. Because my son has some sensory sensitivities these were a little tricky. We decided to try one of the top rated amazon headphone, the LilGadgets Connect+ Premium Volume Limited Wired Headphones with SharePort for Children and just double checked we could return it as necessary. But, they worked! He tolerated them and they were rated highly for not breaking which made me happy. We’re a year into using them and no complaints by my son or me!

Labels

Every parent needs labels for their kids stuff (otherwise half of it would be gone, right?) What I particularly love about the Mabel’s Labels is that they have a wide array of icons that you can add. These are perfect for kids who can’t recognize their name but can instead find their stuff by using an icon. Having panda bear pictures on our labels really helps my son recognize his own belongings.

Fidgets and Chewies

Back to school means making sure you have adequate fidgets if they are a tool help your child. There are innumerable types of fidgets including my favorite (for myself and my son) spinners!I even found a panda spinner this year for my oldest!

Chewies are also an important tool for many children with special needs. I like any chewy that is on a necklace or bracelet (because it lasts a little bit longer). My son loves all things LEGO including a fun block chewy.

Lap Pads and Animals

Weighted lap pads are another item that may or may not be provided by the school but are often a back to school essential for special needs children. Weighted lap pads provide sensory input that can calm children and help them focus. Weighted lap animals are a fun alternative for younger children. My son has a “lap cat” that he adores. He no longer needs it at school but still likes it at home.

Alternative Seating

While most public schools provide any alternative seating required (and in the IEP accommodations) you will need to provide your child’s own at many private schools. At Ross’ first preschool our OT decided a cube chair would be beneficial. The school could not provide ont so we got him a cube chair from amazon and it was very helpful in his being able to sit and focus during stories and other group time.

IDs

Not every child needs an ID bracelet or tag but for many children having one for school, the bus or field trips can provide added safety and peace of mind. Mabel’s Labels recently came out with new silicone bracelets that have received great reviews for their comfort and staying power.

That’s my rundown of the back to school essentials for special needs children. What else would you add to the list? Also make sure to check out my article on what NOT to say to the parent of a child with Autism and also my best toys for fine motor skill development.

Six Practical Tips for IEP Meetings

July 13, 2019 By Laura Epstein

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.

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

July 10, 2019 By Laura Epstein

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.

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.

Why You Should Send Your Child With Autism to Summer Camp

June 5, 2019 By Laura Epstein

Every year my oldest son Ross goes to day camp. Every summer he has a blast, makes new friends and learns amazing new skills. He has autism and is currently six years old but has gained so much by going to day camp every year. Camp, day or overnight, can be an amazing place for children with special needs including autism. Here are my big reasons why you should consider sending your child with autism to summer camp:

To Learn New “Camp” Skills

The list of skills that a child with autism will learn at camp is extensive and varied. Camps offer everything from archery to cooking and more. The best part about these skills isn’t that your child learns to start a campfire but that they are a great way to build self confidence. Ross has gotten pretty good at swimming by going to day camp and he’s super proud of this skill. It’s been amazing to watch him really feel great about himself about an activity. He’s never really shown interest in a sport before and during the year he doesn’t have a lot of time to do extracurricular activities because of his therapy

To Learn Life Skills

Camp is also the first time Ross got on a bus and the first time he got himself (mostly) changed by himself to go swimming everyday. He keeps track of his own stuff at camp and has learned to do so many things more independently. He is well supported by his counselor but his activities of daily living skills as well as his confidence to do them also improves.

To Improve Strength and Motor Skills

Ross, like other children with autism, struggles with coordination issues as well as core strength. The constant running, games, swimming, obstacle courses and more help Ross with his gross motor skills and strength every summer. It’s like sending him to occupational therapy eight hours a day without him knowing (and sometimes complaining) about having to work on his strength.

To Get Near Constant Social Interaction

This was the part that worried me the most about Ross going to camp. The social interactions at school are, for the most part, more organized than those at camp. There are lots of informal social interaction, lots of games and other social interaction that needs to be navigated. With the help of his one to one aide Ross is able to navigate these situations with his neurotypical peers. He not only survived the social interaction (as I had feared he wouldn’t) but he has made some amazing friends and lasting relationships with his counselors.

To Feel a Sense of Belonging

There is something different about camp. It is more inclusive, less judgemental and they will feel like they belong there. Ross has relayed this to me in his own way and I can see it in the way he acts when we visit camp.

Sending my child with autism to summer camp was a leap of faith after months of researching. Finding a camp that will support your child with autism can sometimes be overwhelming. There are day and overnight camps, inclusion programs, camps geared solely towards those with special needs and autism and even more option in terms of camps for children with autism. We were lucky to find the

JCC Chicago and Keshet to be a great fit for Ross. I would encourage anyone with a child with autism to strongly explore what options are available in your area because for Ross his summers have truly been life changing.

Has your child with autism been to camp? How did they like it? Tell me in the comments below then check out my articles on great books for parents of kids with autism and ways to trick your child into better fine motor skills!

Why you should send your child with autism to camp

Five Signs You Are An Autism Mom

April 5, 2019 By Laura Epstein

When my now six year old son was diagnosed with autism I new it would be a journey. I knew that I would need a lot of help and that I was sort of out of my element. What I didn’t realize was how transformational it would be to me. I didn’t realize I would learn new skills and sort of become a whole different mom. Somewhere along the way I’d become an “autism mom”. That I would become a stronger, more self assured parent ready to help my child exceed. I would also have a set of experience that would be unique to being an autism mom. Here are my five signs that I was an autism mom that maybe you’ve experienced too.

You’ve Strategically Entered and Exited Bathrooms With Loud Hand Dryers

Those automatic hand dryers are not your friend if you have a child with sensory sensitivities. I have planned my entrance into countless bathrooms so that my oldest son and I avoided the loud hand dryers. For those of us with children with sensory sensitivities we are constantly trying to help our kids manage loud, uncomfortable and surprising sounds, as well as other sensations.

You Speak in Acronyms

ABA, LCSW, IEP, OT, SLP… you know what I’m talking about. As a parent of a child with autism you have learned all sorts of terms and lingo that you never would have otherwise heard. It’s not rare that I’m talking to a friend and mention “Ross’ OT” only to be met by confusion. These acronyms and the terms behind them become second nature as we navigate the world of special needs parenting.

You Are a Compulsive Researcher

Research twice, do it once. If I had a motto that would be mine. Google is my friend and gives me lots of information, until it gives me too much and I get overwhelmed. As parents of children with autism we research so we do what’s best for our child. We try to stay on top of the latest research and trends and make sure we are giving our children all the support that we can.

You Don’t Have The Luxury to Not Be a

Helicopter Parent

You’ve probably tried being relaxed, hanging back and seeing if it would be ok. Maybe it was… until it wasn’t. If you’re the parent of a child with autism they often need support, reassurance and many times an example of how to engage with the outside world. Being laid back may have led to meltdowns, struggles with peers, and tears. As an autism mom we don’t often get to be laid back and that’s okay. We are supportive and a little bit of a helicopter parent, and that’s ok.

You Put Everyone Else First, and Sometimes Forget About Yourself

Special needs parenting burnout is real and as amazing as we are at looking after everyone else, sometimes we forget about ourselves. We are the caregiver to everyone except ourselves. We are accepting of everyone’s differences and shortcomings except for our own. We are the awesome parents of special needs but it’s a hard job. We learn to accept help, take breaks, and forgive ourselves because in the end that is the best for our children. Being an autism mom, or dad, is hard but we are our children’s best advocate, friend, and support system.

So, how did you know you were an autism mom? Let me know in the comments then be sure to sign up for our newsletter for all the latest.

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