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.[Read more…] about Beyond Climate Change: Why Greta Thunberg Matters For My Son
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.
The Messy Bun Life is excited to have Lara Sandora from Refresh share her reasons for being a special ed room parent with our community today as a guest blogger.
Why you should you consider being a special ed room parent?
Here are four great reasons to think about signing up to be a special ed room parent:
- Because the other class already has one – or three: This is my fifth year as a room parent, for my third teacher, and in most cases, I am the first room parent the teacher has EVER had. Even if I’m not the first, I know that someone in the class of 28 kids will volunteer to send out field trip reminders and sign-ups for class parties. I know that in our special class of six autistic boys everyone is stretched thin, but that investing in our teachers and staff in this way is important.
- Because special education staff can feel left out: Sped staff may be sent to IEP or safety training and miss the camaraderie of slogging through, um, I mean benefitting from, scintillating PD opportunities with the rest of their staff. They may miss staff meetings to run IEPs or miss the staff luncheon because a kid has a meltdown. Providing special supports and treats can help staff feel more connected – and fostering school connection can play a role in reducing staff turnover in schools.
- Because you know what they want: You likely are walking your special needs kid into the classroom every day. And picking them up. And maybe running over in the middle of the day with a change of clothes. You are sitting in hours-long IEP meetings with the special ed staff. In other words, you know your child’s special education staff better than the teacher of your typical kid who you may just wave at a few times a week. Use that knowledge to provide thoughtful supports – and treats.
- Because supporting sped staff shows them how much you appreciate them: No one knows how hard it is to raise a special needs child, except, perhaps, the dedicated professionals who help us raise them from 8 am to 3 pm for 180 days every year. Studies show that sped kids are more likely to be sent to the office or sent home from school than typical kids. Do what you can to support and thank the staff for helping your child maintain in the classroom all day.
Special Ed Room Parent Ideas:
So now that you’re considering being a special ed room parent, here are some ideas for what to do:
- A basket of goodies: While most room parent gigs support one teacher, and maybe an aide, in the world of special education, there is a team. A team approach makes everything possible – so remember that when you shop. I tend to make generous gift baskets, with many small denomination gift cards, individually wrapped themed items, and of course, some Color Street.
- A baked treat: A loaf of something is always appreciated – again, a whole loaf allows for the entire crew to have a slice. Throw in a coffee traveler from your favorite coffee shop and you have done a better job serving the team than showing up with a single latte in a paper sleeve.
- The ice cream bar – again flexible and customizable is key – and this one is great for the end of the year. Include some non-dairy deliciousness like this from Haagen-Dazs, as well as a variety of toppings and cones, and you will have an appreciative staff. (Bonus points if you happen to schedule this on a day the temperature soars!)
So I hope you’ll consider signing up to be a special ed room parent. Comment below if you have been one or plan to be one!
About The Guest Blogger
Lara Sandora helps busy women refresh their styles, their lives, and themselves. She and her husband are both career public school educators who live in the San Francisco Bay Area. Together they are raising two boys, the younger of whom is non-verbal autistic. Her blog, Refresh, provides style tips, recipes and life hacks for busy women – particularly those who parent, educate or care for special needs children. Follow her on Facebook, Instagram, or Pinterest, where she is busy planning her next vacation.
About Our Guest Blogger
Swimming is a life skill. In our family learning to swim is not optional. My kids go to school, religious/Hebrew school, and swim lessons. Pretty much any activity other than those is optional. At some point a child will be around water and it is important for them to be safe. I breathed a sigh of relief when my oldest son could successfully fall in the water, roll to his back and float.
My oldest son has autism and for him swimming has been an especially useful activity. He had low core strength and swimming has helped to improve that. Ross learning to swim has also greatly increased his self confidence. He now has his sport. Swimming is the activity that he takes pride in and overall enjoys.
Find The Right Program and Instructor for YOUR Child
Now, getting to the point where Ross enjoyed swimming was a process. We tried swim lessons at three different places over the course of about two and a half years. Eventually we moved and decided to try our local JCC’s All in Swim program because that was where Ross was going to go to summer camp a few weeks later. It is a program that specializes in providing children with autism swimming lessons.
When we started Ross was scared to go into the pool area. It was loud and smelled funny plus it had a swimming pool! The program uses social stories but mostly a lot of patience to get him in the pool area and eventually in the pool. Having a program and instructors that understood Ross’ unique challenges was so important to getting Ross comfortable in the water.
We have also switched instructors several times. We switched because of scheduling and teachers moving on to other jobs but each time it turned out to be a good thing. Having a new instructor seemed to refocus Ross. Having a new teacher with new expectations was good for him.
After Ross’ second teacher we also realized that he did better with a male teacher. A great swim program director can find a great teacher for your specific child so be sure to change instructors as neccesary and give any feedback (like needing a male instructor) to the director so your child can have the best instructor.[Read more…] about Why and How To Teach Your Child With Autism To Swim
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!
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.
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!
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.
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.
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.
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.
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.