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.

Back To School Essentials for Special Needs Children

July 17, 2019 By Laura Epstein 1 Comment

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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 Leave a Comment

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 Leave a Comment

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 2 Comments

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!

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

May 17, 2019 By Laura Epstein 2 Comments

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.

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Five Signs You Are An Autism Mom

April 5, 2019 By Laura Epstein 6 Comments

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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