8 Tips for Gatherings with Special Needs Family Members

Our family is a little out of practice. As you probably know, Grant has missed 2 years of holiday gatherings with his family in MN.

Whether we are talking about birthdays or any other celebration; they have come with extra stress and a lot less fun than I wish were true.

The problem for us was that it's very hard to live the magic of Christmas through a child that doesn't seem to know (or care) who Santa is, doesn't seem to care about opening presents and doesn't enjoy the food. Here's my question. What is left? Add social anxiety around having a big group of people in our home and/or being confused about social expectations in other people's homes; and not only is Grant not having much fun...but if we are being honest; either are we/the parents.

Holidays are put on a very high pedestal. Movies and our childhood memories do set us up for some disappointment as we get older.

I reached out on social to see what you guys wanted to hear about this month and variations of the holidays came up. I appreciate your help with the inspiration!

So without further explanation, I came up with some tips for those of you that are or will celebrate holidays with someone with autism. These tips probably apply to anyone with a baby or toddler. Might apply to someone with other special needs. I know autism. Well, I know Grant. So my list is focused on my past experience. I hope this proves to be helpful for someone. Please feel free to add any tips and/or ideas you have to this list.

1. Do not assume you know what the accommodations are to make the event special. Get on the phone with the person closest to the person with the disability (in our case, our child he has been non-verbal and a minor) and ask questions such as "Suzy, we would like to make plans with you in Dec. and we were thinking X, Y, Z; would that work for Tommy and if not, what could we do to make this fun for everyone?"

Please give mom/dad/caregivers a chance to be included in the process of holiday plans and find out if that person can handle your suggested activity, time of day, place, etc. Try to be flexible. Think about when you have a young child that still naps. Do you expect the new mom to bring her kid during nap time? Probably not. So why would you expect a child who can't handle long car rides or strange places any different? I would imagine you wouldn't. Please pick up the phone and talk to people directly so it can be a more successful event.

Along those lines -

2. Find out if it's easier for the family to stay home/host or not. Make it ok for the family to have an opinion. My child has gone through many different phases. There have been times where leaving is really hard or car rides are impossible. There are times he loves the car and does fine other places. It all depends. Because he has a severe mood disorder; it could depend on the day, so sometimes hosting is easier. However, cleaning the house before people come over, cooking, doing the shopping, and then cleaning again has not proven to be great. Yes, he rules the roost. Should this impact others? No. Does it...yes, it does. I am at the pt if you don't like it, then exclude us. Or more importantly, I realize now I can simply decline the invitation rather than be uncomfortable for an afternoon. Finding new traditions and compromises is the answer here. Personally, I really like hosting in theory, but if others could bring the food...that would be most helpful so I am not cooking AND cleaning. It also let's Grant be in his own environment and we can just go upstairs if we need to.

3. On that note, most families don't actually want to be excluded. INVITE. Let the family decide how and if they can join. It's not for you to decide what is too much. For us, traveling over an hour in the car is going to be a pass. I always tell people why we can't go and I hate to hurt anyone's feelings, but we do live in the sticks. Just to get to a grocery store is about 12 mile drive. He can handle that, but pushing past 45 mins...well, no thanks. Remember we still need to get back home. So weddings, camping trips, a 1.5 hour ride to a lunch event...we just have to say sorry we can't come even if we would like to be there. It's not personal. If the intention is to see us, then we need to find a mutual spot or have you come to us.

4. Presents....sigh. The best gifts are giving him what he likes. I mean..really likes. Using this opportunity to introduce things he has shown zero interest in is going to result in zero reaction (and unfortunately an eventual donation to someone else after it collects dust in my house for a few years in hopes he will change his mind). My kid likes pop, youtube, candy, mac/cheese. I made an Amazon wishlist and if you are a parent; I highly suggest making one so people know what is a good gift. He won't like it, but I like new clothes for a growing child too even though he won't respond with a smile. The year my mom made him paper snowflakes was a blast. They were so beautiful and then he ripped them all up in one giant rip fest. It was hard to see her hard work destroyed, but back then it's what he loved. She knew that. Perfect!

5. Food - well, in our case...just don't judge. If we bring the same foods we know he'll eat...that's ok. It's not time for us to introduce 3rd cousin Sally's fruit casserole thing. We are surviving the day in a different environment with lots of people, noise, lack of attn and routine. We don't care what he eats and I hope no one is judging across the living room that I am spoon feeding my 12 year old tucked between my legs as I block his self-punching and "shh" him as he squawks to self calm.

Also, I know you want everything to be fair and equal, but you can also tell people that they don't have to bring anything to a potluck (if that is your families tradition). Again, another shopping trip, another thing to cook, drag in a car. Can you the family the option to donate $10 instead if you have the energy and time?

6. Are we having fun yet? The truth is the primary caregivers are probably not. Speaking for myself, If I don't have anyone to help me, then I am not drinking or eating at a leisurely pace. I am worried and distracted. I am trying to think of something to say while keeping him busy and blocking SIBS. Don't get me wrong. I am not counting down the minutes, but let's just say I am not particularly relaxed either. I strongly believe we need to ask him to do these events. I refuse to shelter him from the public, family, or friends but at the same time...I can't pretend this is a great time either.

7. Hosting this year? Consider a quiet area in your home for breaks and point it out to the family so they know where to go. Don't wait for a meltdown. Offer to show the child around the house and get on the floor and sit close if you want to connect. Talk to the child directly and see if you can find a way to include them in less typical ways if they don't care about food, presents and adult talk. Your guest/parents most likely have to support the child through this social experience, so do not expect them to be fully engaged in adult conversations. It's not a choice. Someone has to focus on the child, even if the child appears somewhat occupied.

8. How we talk matters. Don't talk about the child like they don't understand what is being said or as if they are not in the room. Give the family a break from re-calling recent therapy visits or stressful event. Ask yourself if you would want to have that conversation over turkey and ham or if maybe there is something else to discuss. Special needs parents are consumed by the needs of their family member, but speaking for myself...I have other things going on that I would prefer to discuss. Is small talk hard for you? Share a funny story, ask about work, hobbies, etc. For us, our child can't answer open ended questions. I see a lot of effort from others asking kind questions but please don't be "put off" if I tell you I don't know an answer. I don't know. For example, I really don't know what he does at school or if he likes it.

For our family, I would prefer to share updates through this blog, or with someone 1-1 (and not with him listening). He is endlessly talked about like he can't hear us. It sucks. It's hard to change, but if you haven't seen me in 6 months..a year..I probably don't want to discuss things that are emotional and hard out of respect of Grant and that I was looking forward to a break from this part of my life. (Not always...everything is circumstantial and maybe other parents feel much differently than I do on this one).

Bonus Tip and this is for my Special Needs Parents - discuss the game plan before you walk into the event. How long are we staying? Who is in charge of the kid? Who is relaxing today? What do we do if it's not going well? Who is bringing the special food, etc? It's going to be awkward to navigate in front of your 2nd cousin first removed rather than in the car on your way over.

For everyone: We love our family dearly. We want to spend time and make memories. It's no secret that these type of events are hard. What I want for x-mas is for Grant to enjoy it as we did as children. To enjoy food, presents, his family but if I am being honest... more than anything the thing I want is for him to stop self-injuring.This issue overshadows anything else.

If you have a family member that struggles to enjoy holiday/family gatherings; I hope you will open up the lines of communication with the parents and find ways to accommodate the event so everyone is enjoying their time. Flexibility is what is key here.