Holidays with a Disabled Child

“My heart just hurt for him last year when you wouldn’t meet us at Red Lobster for his big 75th birthday.” That was from my stepmother.

A few weeks ago, my dad turned 76. We did the very Pennsylvania thing and went to Shady Maple for his birthday. But, of course, my stepmother and I had an altercation over it.

special needs holidays

She can never just let things be. Like if I ask my dad to meet for a meal, she can’t just say yes and go. She has to say something either obnoxious or passive-aggressive and this was no different.

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First of all, all crappy food aside, I have nothing against Dead Lobster. Except for the fact that every time we go, we have to wait 2 hours for a meal. Which leaves me to entertain an autistic kid with epilepsy for 2 hours in a crowded restaurant lobby.

Sometimes, my family just cannot do things that other families do. Waiting 2 hours for a meal is one of them.

Holidays are another. They just look different for us, and I’m ok with that. Just not everyone else is.

Here are some tips for staying sane in the coming months, and communication tips so that others can better understand what you’re dealing with.

Plan now so that everyone can enjoy the holiday season.

So what did I do about my stepmother? I’ll tell you at the end.

School Holidays and the Disabled Child

  1. Communication is key! Communicate with your child’s teacher, read the school website. Find out what changes are going to happen as best as you can. Prepare your child for these changes–different meals, assemblies, early dismissals, whatever it may be.
  2. Ask your teacher to have a “one sheet” included in her sub-folder about your child. This should include the necessary information that a sub would need to know about your child and what may cause them anxiety. That link will take you to templates to make one.
  3. Have daily briefings at breakfast and dinner. It sounds formal, but it doesn’t have to be. Just talk about what is going to happen that day or what did happen that day. What will be different?
  4. Contact his therapists or whoever works with your child and ask if they can do more role-playing, scripting and/or social stories related to holiday festivities.

Holidays with a Special Needs Child at Home

  1. If you haven’t sent out holiday cards in a while (not many people do it anymore!), consider sending them to the people you will come into contact with, might be visiting or might be staying with this holiday season. This is an easy and private way to share your child’s “quirks” and expectations.
  2. Talk with your child. Find out what their expectations are and make sure everyone is on the same page. Prepare them as best you can. Again, consider the morning and evening daily briefings.
  3. Pick your battles. For me, I’m not going to make food the issue. I will bring what is necessary so that kids get nutrition in them, and decent nutrition–not filling up on cookies and candy. This is not the time, in my opinion, to force a child with extreme food issues to eat the 9 Fishes dinner. Am I right? And to be honest, I hate uncomfortable clothing so why would I expect a sensory kid to put on a suit and tie willingly? Pick your battles and let your hosts/hostesses know via Christmas card what to expect.
  4. When visiting, bring things that are a comfort to your child, especially if staying overnight. A favorite blanket, pillow, and their own shampoo will go a long way in soothing a child that is not sleeping in their own bed.
  5. Don’t force affection. This is another item you can explain in a holiday card. If your child does not want to embrace and kiss relatives they barely know, or do not enjoy being hugged, respect that. Explain to the relatives that your child really does care about them, but that this is not how they show it.
  6. Have an escape signal or word. Give your child an “out” if it is more than they can handle.
  7. Go visual. Have a color-coded calendar or some other method of visually outlining what your family is doing. Consider doing it with velcro so that items can be moved and removed if you need to alter your schedules. That way it’s not “etched in stone” for the rigid thinkers.
  8. Sensory friendly events and Quiet Santas are very common around the holidays. These are a great opportunity to participate and be able to relax a little bit and let your hair down, be among “our people.” People who “get it.”
  9. Set your child up for success. Pre-arrange conversations with relatives so that your child is included. A simple “I heard that you really enjoyed your school field trip to the museum” might be much more engaging for your child instead of “what’s your favorite subject at school?” but a relative may not know that.

Stress, Holidays and IEP Moms

  1. Remember that holidays and holiday breaks are intended to be a relaxing time and a “reset” so that you can go back to work/school rested and refreshed. Keep that in mind as you do your holiday schedule.
  2. Say no. Often. You don’t have to do everything.
  3. I like to sometimes take these opportunities to educate family and friends about our issues. But, keep your child in mind–do not talk about them in front of them and so on.

Remember this Acronym.

SWEEPS is an acronym you can put in place with your family to make your holidays run smoother.

S: Sleep. I am militant about my kids’ bedtimes. To the point of being annoying at times, but I don’t care. I know what is best for them. Lack of sleep in kids and adults has been linked to everything from obesity and diabetes to stress, depression and heart problems and increased seizure activity. Sleep is not valued enough, well, it is in our house. But during this busy time, we have to make extra efforts to stay on our sleep schedules. And this is for kids and parents! When we go to a family outing, I almost always bring my kids’ PJs with us and change them into them right before we leave. Then all I have to do is carry to their beds, for minimal chance of interrupting.

W: Work. If you have work pending, don’t ignore it. Get tasks done so you can enjoy your holiday season or it will be weighing on you. And for your kids, keep their minds busy. Most of them are going to be off from school anywhere from a few days to a week or more; that’s a really long time with no academic stimulation. Talk to teachers and therapists now, about what are some small, simple things you can do at home and exercise their minds while reinforcing what they are doing at school.

E: Eat. Eat, and eat healthily. Sure, indulge on the treats as appropriate. But when a machine doesn’t have good fuel, it doesn’t run well. Moderation is key. And some people, both kids and adults, have some food triggers that can either bring on headaches, intestinal discomfort or behavior problems. Make sure you know what everyone is eating. I bring a lunch box with food for my kids just about every place we go, just in case. (My son has feeding issues.) I don’t care who is insulted–if my son has to eat a PB&J at Thanksgiving dinner, so be it. It’s better than him going hungry because he can’t/won’t eat what is being served and then fills up on cookies.

E: Emotions. Let’s face it, around the holidays there are times when I am on sensory overload. Let them have plenty of downtimes to deal with emotions. This goes for your typical kids too. If you have a rigid-thinker, black and white, “there is no Santa” child in your house, acknowledge that with your other kids. Let them be angry about it or experience whatever emotions they have. Let yourself feel the frustrations you’re feeling. Hopefully, if we’re all sleeping enough, eating healthy and getting some exercise, there will be fewer emotional triggers or meltdowns. But you know they can and do happen. “Predict and Prevent” right? Arrive at gatherings early (when fewer people are there) and leave early (before volume skyrockets).

P: Play. Play. Have fun. Exercise. Get moving. Walk the dog around the block. Do a few laps on a walking path at a local park. Find an area that is enjoyable for your child and get some outdoor activity and/or exercise. In addition to the W: Work item above, it will not only work their brains but overall everyone will feel better. If your child has played video games for 10 hours every day for 10 days, how well is he going to readjust to school?

S: Say No. Don’t overextend yourself or your family. Learn to say no without guilt. A friend of mine once said to me: When you say yes to something, you are saying no to something else. You don’t have to do it all. We can’t do it all and retain our sanity.

My stepmother? I just sent her two snarky text messages. It’s how we communicate in our dysfunctional family. I reminded her that for the better part of the past 2 years, we’ve barely left the house due to Kevin’s seizures.

When it comes to my family, I live by Oprah’s words.

“Do you want to be right? Or do  you want to have peace?”

Oprah via Maya Angelou quote.

I choose peace. Above all else, the best advice is to know yourself and know your family. Moms have great instincts and now is not the time to ignore them. We know what our kids can handle and what will make an enjoyable holiday season for everyone.

And most of all, have a great October/November/December. This is a great time of year, enjoy it!

{Author’s note: This was originally published in October of 2012 but was updated to fix links.}

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