1. Presents are hard.Your child may have no concept of a present and cannot tell you what they want. It’s likely they don’t play with many toys and the things they do like to play with really aren’t toys. They’re blankets, strings, or straws. They often break toys or books because they really should work the way they want them too and not the way they were made. So finding something to get can be challenging. I’m very thankful they are coming up with more and more sensory toys for children.
2. Family Gatherings are Hard. This Thanksgiving we made a quick trip to see some family. We told them ahead of time we would stay as long as we could, but not to expect much. We stayed for an hour and it was all we could handle. So we went home and had our Thanksgiving turkey lunchmeat sandwiches in the car. Thanksgiving isn’t about the turkey, so we didn’t miss that too much. We were glad to see family though, even if it was short. We are learning to appreciate all the moments we have with family. Because sometimes that’s all it is.
3. It’s Hard to be Present. If special needs families try to attend family gatherings more than likely they aren’t fully enjoying it because their attention and care is directed towards their child and/or they have to leave early because of sensory overload or mental/physical exhaustion. So don’t get discouraged if they aren’t fully engaged or choose to leave early. It’s not because they want to, they wish they could be more present, but they can’t. Perhaps suggesting a smaller gathering of family as a place the child is more comfortable at could help.
4. People Don’t Understand. They can’t. That's no knock on them either. Because unless they’ve lived it they just have no idea what it is like during the holidays and how much planning goes into coming to a family event. Because of all the planning they may ask a lot of questions. Please answer them and don’t make them feel bad. They have the right to set the agenda for their child. They are just trying their best to avoid any and all potential minefields. We greatly appreciate the people who may not be able to truly understand, but they try and do their best to work with us.
5. You Feel Alone. This is very common among special needs families for the reasons listed above. You feel alone in the challenges you face and you literally feel alone because you either cannot attend or aren’t present when you are there. When you see other children sitting with Santa or talking about the gifts they got that Christmas your heart mourns a little bit. I’m thankful for the mamas in my life who get this with me so I don’t feel alone.
The Holidays don’t have to be a wash. Buy your child what they like, even if it may be a bit unconventional. Set boundaries with events and stick to them. Ask the questions and don’t feel bad about it. You’re not trying to be controlling, you’re trying to be proactive. You know your child best. Find a rhythm that works for you and celebrate all the wins. Also, remember, it’s okay to grieve. You don’t have to be supermom/dad.
I’m reminded, as well, that Christmas isn’t about presents or even family. It’s the birth of Jesus-- the birth of hope. Because of Jesus and God’s promise of restoration I have hope for my son.