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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.

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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Why You Should Send Your Child With Autism to Summer Camp

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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 summer camp