Many of you may be nodding your heads in agreement with keeping the holidays simple, flexible, inexpensive…and you’re ready and willing to do this. But it isn’t long until someone in your family protests. Usually it’s an extended family member – your mother, sister, uncle, grandfather – someone who doesn’t understand why holidays can’t be like they were “before”.

This is where your plans for flexibility and simple traditions start to derail. It’s also where the extended family member (whether they intend to or not) lay on the heavy guilt trip. ATN’s support groups and crisis line get lots of calls and emails about this very quandary. What’s a parent of a special needs child to do?

Well, the answer isn’t necessarily simple, but it can be straight-forward. First, you need to recognize this family member’s needs and wants and validate them. Tell them that you understand it is important to them that you and your family attend and maintain the status quo. Then get them to discuss with you why this is important and what alternatives can be made to accommodate your child’s special needs or your family’s need for flexibility and simplicity. Remind them that things can't be like they were "before" because your special child has special needs.

Then regardless of their response, retain the final decision-making power for your family. This is easier said than done. For most of us, it’s hard to tell our parents “no” even as adults. To tell them that we won’t be at a family gathering or able to participate the way they like can be very difficult. But the truth is that we’re the parents of our special children and we truly do know what’s best for them.

Give your extended family the chance to modify their plans to fit your family’s needs (making it simplier, shorter, with the right foods, without the stimuli…whatever accommodations your child needs). If they are able to do that and you feel there’s a good chance it would be an enjoyable thing for your family, then go. If not…then don’t.

I look at it this way, if my child had a terminal illness or a contagious disease, my family would likely be very accommodating to provide whatever was needed so my child could attend. OR they would understand if I told them my child wasn’t healthy enough to attend. But children with developmental or emotional disorders are viewed differently – yet they shouldn’t be.

The same goes for gift giving. If your child has a physical disability, it may be easier for extended family not to buy him a gift that he couldn’t use. But with “hidden” disabilities, parents report that their family members don’t understand why the child needs special restrictions on gifts.

Yet, I think we also have to realize that our extended family truly may not KNOW our child’s needs. So we have to be direct and tell them. In the early years we had LuLu, I wasn't nearly as direct with family and friends as I am now. It was like I was embarrassed about my child's needs and behaviors, and was insistent to force both her and I through the events. And everybody suffered.

If your child can’t handle large events that may overstimulate, suggest quiet outings or in-home celebrations with just a few people instead. Suggest to grandparents that they come by to celebrate at other times, when anxiety levels are lower. Give them direct ideas on what is appropriate as far as gifts go. Communicate directly and clearly.

And realize that your extended family may be in a different “place” when it comes to accepting your child’s special needs than you are. They may have not had to confront their grief and disappointment about his/her disabilities the way you have. Holidays are a time when these differences become evident and your loved ones may have a hard time dealing with this.

So, extend compassion and understanding, but don’t agree to something that will be disastrous for your family. Just because you realize your mother is grieving the loss of a “normal” grandson doesn’t mean you should agree to bring him to a formal cocktail party where he’ll have to sit quietly for hours when you know he isn’t capable of that behavior.

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