mother and son making snow angels

This time of year can be chaotic. That time between Thanksgiving and Christmas? In our family, we find ourselves running around trying to recover from one holiday and gear up for the next.

My son T.J. is 16 and has autism spectrum disorder. Over the years, some of our holidays have been seamless, and others challenging. We have had to find what works for our family and tweak it year after year as different locations, people and changes in T.J. himself affect him.

This year, both T.J. and his brother Peter, 15, had the entire Thanksgiving week off from school. Thank you, school district, for those extra few days!

The Tuesday before Thanksgiving, we drove from our home in Vermont to my sister’s home in Boston. My sister and her husband have four kids, and the cousins all really love each other. But get those kids together, and the noise level definitely goes up a notch or 12.

T.J. has learned over time to find a quiet spot for himself in my sister’s house and retreat there when he needs a break. Everyone is very accepting of whatever T.J. needs to do to be OK with the increase in activity and noise. No problem.

Thanksgiving day comes along, and we all pile into cars to caravan to our cousin’s house in Connecticut. Our Thanksgiving crew has grown as our families have grown, and we are quite the loving, rowdy, laughing, fun-filled bunch! It’s really a wonderful group of family, filled with love and understanding for our T.J., who finds his own coping mechanisms each year. This year, he spent a lot of time with his iPad and headphones, with breaks in between, and not only was Thanksgiving day a huge success for our noise-sensitive guy, he even stood up and made the most beautiful toast at the beginning of the feast. It brought me to tears, as he expressed his love for his family.

The day after Thanksgiving was another wonderful one back in Boston, seeing the wonderful family who could not make it to the feast in Connecticut. It was a little more low-key than Thanksgiving day, but still filled with activity. T.J. did a great job, and we all had a wonderful time.

On Saturday, as we drove home to Vermont, I reflected on T.J. and his behavior over the past few days. I beamed as I thought of how far he has come — he no longer has meltdowns during the holiday as he has figured out what works best for him, and we have all supported his coping skills during the chaos of travel and people.

I felt so proud.

My husband Sean reminded me as we drove that we needed to stop at the outlets to try to find some new jeans for our constantly growing boys. We knew it would be hectic, as the outlets would be filled with holiday shoppers, but we also knew desperate times call for desperate measures. So we stopped.

Long story short, we knew the crowds might be too much for T.J., so we decided to try on jeans for sizing purposes only and order them online after we got home.

What I didn’t know, and what Peter told me later, is that T.J. was muttering curse words under his breath the entire time we were there. He was really stressed out and holding it together by a thread.

When we finally got home, T.J. exhibited some strong words and signs of anger. The only one who could get through to him and help calm him down was his brother Peter.

After T.J. and Peter were both settled in back at home, I wondered how I could have missed it. Here I was, walking around without realizing that brewing beneath the surface of my sweet T.J. was a stressed out boy struggling with some of the challenges brought about by his autism.

How had I forgotten the years past when my focus was so keenly placed on how T.J. was doing? How had I forgotten his ability to cope with noise, activity and stress is finite?

Throughout the years, we have learned what T.J. needs in order to be comfortable in even the most busy environments. A quiet space for a quick retreat, if possible. Earplugs — I always have a stash in my purse. Deep breaths. Shoulder squeezes — tight ones. Back scratches. And worst-case scenario, leaving the area to collect ourselves. I have learned I need to check in with him frequently, especially in very active and busy situations. But now that he is older, we are teaching him to take the lead in his own self-care. Letting us know when he is feeling tense. Asking for the squeezes or scratches that he needs. Asking to leave the area if need be. Advocating for his own well-being.

This is the latest and, I believe, one of the most important things for T.J. to learn. Advocating for his own well-being. We reiterate that taking care of yourself is a critical part of growing up. Asking for what you need to be OK does not make you a “bad kid” or a rule-breaker. It makes you human. This will take time for all of us to get used to. There is no overnight “fix” for these challenging situations. But with attention to the matter, room for error, and love behind all of it, we know he will learn just what he needs to do for himself to be OK.

And I couldn’t be more proud of him.

Live and learn. Every day.

I hope you all enjoy your holidays with your families just as much as I look forward to enjoying my holidays with mine. With patience, love, respect, room for error and flexibility!

And cookies. Lots of cookies.

mother hugging her son from behind

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Holidays used to be a challenge for our special needs family. My wife and I have two boys, Peter and Daniel, aged 17 and 15. Dan is autistic and nonverbal. Years ago, my wife and I made the decision to no longer go from home to home trying to see everyone for the holidays. What is often meant to be a fun and relaxing tradition with relatives was stressful for our son and a challenge to plan. For the weeks leading up to the holidays, we would have discussions, checklists, plans, backup plans and worry all the way to the party.

So instead, we opted out. We decided we were going to stay at home and have Dan in his most comfortable environment instead of going to another’s home. This decision would help alleviate many of the challenges we faced as a family. As for our other family members, we decided if we were not going to go to their home, we would instead have a “Holiday Open House” and invite everyone to come to our home. We called them and said something like, “If you can make it, great. If not, no biggie. No pressure.” When we did this, something amazing happened. Everyone came to us. As I look back on the last 10-plus years of my life, I found I have consistently underestimated the amount of support available to us.

This year will be our 10th year of hosting the holidays. I am so grateful for our loving and understanding family. They support us, love Dan immeasurably and don’t judge our methods. What was a family decision to help our son years ago is now our family tradition. At our party, Dan often hangs in his room, comes down periodically to see who is here and check on the festivities. And as the years have gone on, he has gotten more into it, coming down more frequently and hanging out with the guests. The difference today is that when he has had enough, he goes to his room for some quiet or to be more in control. During the party, family filter in and out of his room to see him, play with him, or just to get some one-on-one Dan time.

Some of the great things my wife does to make this a fun day include a (heated) trivia contest, a “guessing jar” of candy where the attendees guess the number of pieces, and the wildest “White Elephant” exchange in history. All contests have small fun gifts, and I am always as surprised as others to see what they are. As for me, I make it my goal to provide a huge holiday meal and channel my inner chef.

In looking back, this decision has helped us be more aware of the opportunities and support we have. At times, it can be easy to get overwhelmed and think we alone must solve every challenge in our child’s life. This experience and many others have taught me that when we let go of how things “should be” and realize we don’t have to do it alone, the possibility of something better always presents itself. Funny enough, what was once a stressful decision for my wife and I has ended up being one of the greatest Christmas gifts I ever received: a change in perspective.

My hope for the readers of this article is if you have a child with special needs in your family, that this year you receive the same gift I did.

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I’ll never forget the day my son came to me and said he didn’t want to be “special,” he just wanted to be “normal.” I was so blindsided by it I didn’t know how to respond at first. I asked him to elaborate on it, and he told me everyone’s response to him not being able to do something because of his autism spectrum disorder was to tell him he was special, and he hated it. He didn’t want to be “special” if it meant having a hard time doing things others could do more easily. He would much rather be “normal” and be able to do the things everybody else could do.

I took a moment to take this in and consider how to respond to it. I knew whatever I said could have a lasting impact on him, and I was terrified of saying the wrong thing. I began by telling him I understood his frustration. It was a fact that he faced certain challenges because of his autism, but he also excelled at certain things. I told him everyone was special in some way, because everyone was unique. No one person was like another person. We are all different. We are all good at some things and not so good at other things. I gave him examples of the things he was good at and I wasn’t good at, and the things I was good at and he wasn’t good at. This piqued his interest and got him so excited he decided to make a list of things others he knew were good at and weren’t good at, and I knew he was going to be OK.

The days that followed had him going around asking people what they were good at and what they weren’t good at. By the end of it, he had a notebook full of profiles of people we knew, and I had found out more about them in a couple of days than I had in years!

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As a child, and well into my 20s, I’d become “overexcited,” spinning in circles on the hardwood living room floor in front of my parents, flapping my hands with excitement, dancing in circles, sliding side-to-side. I’d scream and cry when certain sounds came on the TV, and have meltdowns when my shoes didn’t feel right or I had to wear certain materials. Someone actually took a picture of one of my meltdowns over ill-fitting shoes.

My autism wasn’t acknowledged throughout my life, until just recently. My mother was once told I was autistic by doctors, but she chose not to believe it and said to me, “You’re artistic, Charlie.” That was one of my many nicknames.

I still have these moments, but now I don’t feel ashamed of them. I no longer believe I must act “normal” or neurotypical. I’m much better when it comes to clothing now, but that’s mainly because I can choose my own. A nose tic I’ve had all of my life is no longer a mystery, as many people with autism can have tics. Everything has fallen into place due to a couple of observant professionals. I can’t be thankful enough.

I take pride in stimming, especially at home or in the car (a place where I need extra calm). I’ve made my own sensory toys and bought some as well.

Though my autism diagnosis wasn’t acknowledged in my younger years, I was in special education. It was the right kind of education for me. I thrived there. Not everyone learns the same. I process slowly, and at the new alternative school, I didn’t have to listen to lectures. I basically got to choose my own courses, and they were mostly dealing with abnormal psychology.

I have lived my life acknowledging I was probably an “Aspie” on and off, until one day a sociologist said, “You’re autistic, aren’t you?” I was blown away.

My point is, special is amazing. If you are a parent with an autistic child, I hope you realize that. If you are autistic, I also hope you realize that.

Follow this journey on Perpetually Autistic.

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