Holiday Challenge: Being a special needs parent during the holidays

I have been a mom to a son who is on the autism spectrum for over twenty years now, and I have pretty much dedicated my life to working with people with intellectual disabilities. I recently saw someone post on Twitter a comment about how hard it is for her as a mom to see her daughter with autism struggle, so I thought I would share some of my pointers for making it through the stressful holiday season.

Tip #1: Your kiddo is yours. You know what is best for your child with special needs. Trust your instincts and your gut and do what is best for you and your child/children.

If that means not visiting the designated family member’s during the holidays because the house is too loud, chaotic, etc. then so be it. Try to include family in making a plan to visit either before most of the family arrives, or after most everyone else has left. Disclaimer: I use the word “try” here only because if you know this conversation is going to over like a lead balloon, then I suggest instead that you consider your options and decide from there what is best for you and your child and do it anyway.

Tip #2: Your kiddo is YOURS. Yeah, I know I said that already but it bears repeating. Your child will more than likely not be able to recognize how their needs impact you. In fact, when you think about this too much, it is going to be emotionally exhausting.

You will hopefully have or at the very least be able to find people who are freely willing to share with you their thoughts, opinions, experiences, and advice on how to raise your child(ren) with special needs. Let this sink in: it is going to happen if it hadn’t already, and even if it has it will definitely happen again.

Hopefully though, you will also find support for you to keep doing what you know is best for your child/children. Even if you don’t find that support, though; do what is best for your child anyway.

Tip #3: Take care of yourself. Whether it’s filling out papers for your child’s Individual Educational Plan (IEP) meeting or getting their prescriptions filled at the pharmacy, being the parent of a special needs child is never “done”. My son is over twenty and there are still things I have to do to help him be as independent of a young adult as he can be.

In the past, I have ignored my needs in order to be sure I had time and energy to devote to him. However, I am also reminded since I do this not just at home but as a job too that I must find ways to rejuvenate myself. Whether it is reading a chapter in a book or taking a little longer in the shower, find things you can do to help you relax so you can devote your energy to your kids.

Tip #4: Celebrate the victories! Enjoy the little moments, and write them down if you need to in order to reflect on them during rough days. Find tools that work to deescalate any meltdowns and then consistently use them. If you haven’t found something that works, keep trying for you and your kid’s sake!

Tip #5: Know the “tells”. My son has finally gotten very good at being able to tell me (verbally) when he needs a break, but believe me when I say it wasn’t always this way. He often couldn’t find the words to tell me what he needed, or his brain was overstimulated to the point he couldn’t process anything else. I had to learn his tells.

My son had a few “tells” prior to a meltdown. If at this point you’re thinking you don’t know what they are, think again! I bet you know more than you give yourself credit for.

My son would get really quiet, and his face would turn red. He might start to clinch his teeth. He would get into your space or avoid you completely. He might hold his breath or his breathing would quicken. His meltdowns were all different depending on what brought it on. Sometimes after the fact he could tell me, but other times he couldn’t. Knowing the tells and teaching him helped him to be able to mostly avoid overwhelming situations or to learn to ask for what he needed.

Tip #6: Have an “escape plan” My son was eventually able to start to come to me with ideas, based on strategies we had used in the past. For example, at his aunt’s house he needed to know once lots of people got there he could retreat to her living room instead of the kitchen where most everyone else was for some space. What works this time might not work next

time, but have a strategy for how to help your son or daughter through a tough situation. Tip #7: Relax, your kid is “normal”.

I once celebrated my first letter from a teacher about my son’s behaviors at school. He apparently had jumped in a puddle of water. I was so happy because this was something I told myself that any other typical, “normal” boy would do. I was elated by that thought. Our children have some special needs, but they have all the “normal” needs - to be loved and supported, encouraged and praised.

Tip #8: Start (or stop) a tradition

New Year’s Day is around the corner. Watch the ball drop or don’t, but before you do think to yourself “what is my child’s preference?” Do they have one? Can they tell you if they do? Is there a way to include their choices into a new tradition or does their choice mean you need to stop a tradition? Did they always watch the ball drop with you and now they need to sleep off that growth spurt? Be flexible and willing to let it go if they decide they no longer wish to do it, or be willing to pick it up if all the sudden they show an interest in it.

Tip #9: Talk to your child.

My son during his teenage years only answered questions in one word answers, but it was still something! Keep the lines of communication open so when they are ready, they can come to you.

If your child is nonverbal, talk to him or her anyway! Tell them you love them. Try to find ways for them to communicate with you. Ideas are endless, but some options include; Pecs symbols, sign language, yes/no signs, or any other method you come up with that can help our kids communicate their wants and needs can be the greatest Christmas present ever! I still remember telling a mom years ago that I wanted my son to be able to say I love you, and now he can. Behaviors are communication too, but once he was able to find his voice he became less frustrated and his meltdowns happened less frequently. Holidays are hard enough, and having a child with special needs can make it all so very much harder. Finding ways to make the holidays fun or relaxing is essential to you as well s your child’s well-being, so when they get older they already have the tools they need as an adult. May you be encouraged as you start the new year! Hugs!