Stability Comes First

Traveling and holidays with children on the spectrum can be tricky by themselves. Combine them and even something as simple as going to grandma and grandpa’s house for the day can drain them and put them in a tailspin. That’s if they are not already struggling due to other factors.

Across town is sometimes doable. Let’s be honest though, more and more of us live further away from our relatives than a simple drive across town. It’s tough sometimes to even get them in the vehicle. So even then a trip across town is hard.

As a parent you are torn between your child and your family. How the family reacts can make us or break us too. Take for instance a family that understands you can bail at a last minute due to the child bordering on struggling and discomfort before you leave. You know that the house or event you are going to will be loud and lots of people talking all at once. There will be laughter and limited outlets for them.  If you go, said child has a greater chance of a meltdown and more discomfort than if you stayed home and gave them the much needed down time.

If the family understands that a 2 hour drive to their home is going to make the child struggle more because some children like Em stim more or get sick traveling in the car, it sure makes that decision easier on us. However, if the family makes us feel guilty or bad about our decision, who is putting who’s needs first?

Raising children like Em requires as much support as we can get. That doesn’t mean we want advice. It doesn’t mean we want to talk about it. We’ll lead the way on those things. If we are telling you that this child is struggling and offering an apology, please just accept it. Or better yet, ask if coming to them works. It may not, but the offer alone means more than the expectation that they should always come to you.

We’ve come a long way in our family. Unfortunately, Em struggles with riding in the van. Trips to see relatives are few and far between. I know it bothers them. It bothers us. And our time up there is limited as a drive like that will take her 2 or 3 days to regroup. While we are there, we have to have outlets for her to decompress. There is always a quiet space for her.

Food on the road is hard for her too. She is such a picky eater. A lot of kids are. Kids like her though usually have a reason. If they have a sensory issue, food is tough for them. Sometimes it’s temperature or texture. For others it’s taste or smell. Sometimes it’s a combination of things. If you see them eating only one food at your house, please understand we probably are aware of it and have alternatives in place. For us, we usually see if Em is going to eat while there. Then we stop and get her food on the way home.

Em is part of our family too. So asking us about respite care or finding a sitter for her is like us asking you to board your dogs for the day. These kids love their relatives too. If they find out that they were “uninvited” due to their potential struggles and other kids are there, they will be hurt and crushed. They get that from classmates inviting others but not them to sleepovers and parties. The last people who should do this is the ones who care about them. Show them love and understanding. It’s all or nothing for us at our house and we’ll take on anyone who suggests otherwise.

We try so hard to fit extended family in. And we are fortunate that our families try to understand. There are times it’s hard on them and on us. Wedding we have missed. Graduations we wanted to go to. Birthdays and anniversaries. Baptisms and funerals. Thanksgiving, Christmas and Easter are 3 holidays we tend to warily debate on a day to day basis. Em’s stability is our priority. Just like many other families. We do our best. To some it will never be enough, but we have found a place of moving forward.

So next time a family member declines at the last minute, give them love and acceptance instead of guilt and frustration.

 

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One thought on “Stability Comes First

  1. Pingback: Stability Comes First | lasmith36

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