While life inside our walls can be dramatic, sometimes surreal and on occasion ‘normal’, there is plenty of life that happens outside our walls. These events are approached very differently for the family with a child with a hidden disability. I am going to share some examples of how we cope from our family experiences. Within the confines of my family (immediate) and my husband’s are at least five children (on either side) with hidden disabilities, it makes life interesting and we have become pretty good at finding potential problems before they occur. Here are some of the things we’ve done:
This past Christmas my husband’s entire family went to Florida together. We were all pretty excited about the trip but we knew we would need to make some special adjustments so that our children could enjoy the trip, too.
At Disney we chose to get a Fast-Pass for one of the kids because standing in line can become a major issue. If you go to the customer service desk you can get special needs passes.
We flew a child home rather than forcing them to endure the four day drive home, we knew that they could manage the drive down, but not the way home once all the ‘fun’ had worn off. (Funny thing – he was really disappointed he didn’t get to do the drive!)
We switched the groupings of cousins so that no one had to be together for too long in a stretch where there was the potential for friction.
We opted to take our kids home early when we realized the overcrowded park was wearing down the facade of control. Staying and trying to force the kids into having fun wasn’t beneficial to anyone. Because we were with other families those who needed to leave could and those who wanted to stay continued on having a good time.
We drive as far as we possibly can in one stretch, going through the night. When we’ve attempted big trips we’ve always had three drivers so that makes this more do-able. The least amount of change/new beds, etc. is what we go for.
We take LOTS of snacks and movies along. We have even hooked up the Wii so that there was lots to do.
We have a van that has eight bucket seats, this was the best investment for making long trips. Everyone has their own space and it isn’t crowded, very important to the child with sensory issues.
This was the biggest vacation we’ve ever attempted and we decided that it went pretty well.
Church and Youth Groups and other social situations
In a place where children are expected to be quiet and respectful church can become a minefield. You want to enjoy fellowship, worship and hopefully gain some wisdom, but mostly, as a parent you are waiting for the next shoe to fall, literally.
Kids with behaviour issues have a hard time sitting through church. For them it is a painful test of endurance and consequently it becomes so for the parent. Our son has become a master of controlling himself in church now that he is a teen-ager but it was not always so. We used to spend most of the service in the foyer. His way of controlling himself may look a little odd from the outside (hunched over, looks like he’s sleeping or hovering outside the doors) but he’s there and he’s listening.
We became the teacher for our son’s classes.
We had frank discussions with teachers, supervisors and group leaders as to what his triggers are and how to avoid them.
Chaperone events so that you know proper supervision is in place.
It is probably a really bad idea to have them babysit anyone.
Don’t leave them home alone with their siblings. This may sound harsh but remember that their social mores are hampered, they have to have supervision because, quite honestly, they can’t be trusted to know what is appropriate.
Keep a doors open policy for play dates. Bad things happen when the doors are closed. Keep the doors open when friends come over and advise this to parents when your child goes over to play. It is safer for everyone.
Appeal to the compassionate side of older kids in your child’s school or groups. Often these people can become excellent mentors and friends for your child. They are old enough to understand the situation and to behave appropriately with your child.
For the most part, unless your child actually likes shopping DON’T DO IT!!
Decision making is often hampered in kids with hidden disabilities, shopping is usually a disaster. Here is how it goes. They decide they need new shoes, not because they really need shoes but because their brother got shoes and therefore if they do not also get new shoes then you have rejected them and they will die. They must have shoes. So you cave in and go shoe shopping. You tell them there is a limit. They die again because there is no way that they will ever find the shoes that they have in mind for such a small amount of money. You haven’t left the house yet.
Now you are at the first store. The kid wants red shoes, so the clerk finds all the red shoes but you let them know what the budget is and then start praying that one of these pairs will appeal to your child. Then there are two pairs that might work and a decision has to be made. What will all the people at school and in the next town think about these shoes? Most likely something catastrophic will occur if the correct shoes aren’t chosen. We should look somewhere else for shoes. This goes on all day. There is a lot of hair pulling and head banging.
One of two things happens. #1 – The child decides they don’t like any of the shoes, they can make do with the ones they have. #2 – We go back to the very first store and go through the same dilemma with the two pairs that we started with and eventually buy a pair that receives glowing reports for about two days. #1 almost never happens. It won’t be long before we need shoes again.
Be prepared for the manipulation, it will happen and they are rather brilliant at it!
Offer only two choices whenever possible, their decision making capabilities are not great.
Make a budget and stick to it. As they get older let them know that if they want the brand name thing they so desperately must have, they can pay the amount over the budget. (get the money up front, they conveniently ‘forget’ to pay it later)
Sports can be a huge blessing to the child with disabilities if this is something that they are good at. Unfortunately they tend not to be great team players. There is some hard wiring in their brain that tells them that nothing is ever their fault. If their team fails it is because everyone else was doing it wrong. If it is a doubles team (badminton), the other player has made all the wrong moves.
Personally, we have encouraged sports because this is something our son happens to be good at. There are very few things that he will pursue because his fear of failure is enormous and generally eclipses all else. However, with certain diagnosis, recreational therapy is recommended and you can often get funding for it. Put that all together and we can usually keep him active enough that he doesn’t get too bored. He plays volleyball, badminton and takes a parcour class.
Another family we know has a son who loves horses so they got him involved in a 4-H club that allows him the opportunity to work with and ride horses, it is one of the few things he really enjoys.
**If you are new here you might want to know that this post is part of a series on hidden disabilities. I am going to be continuing this series for all of October as part of the 31 Days Challenge. You can see all of the amazing topics over at The Nester’s! To go back to the beginning of this series click on the Alphabet Soup tab and you can see the indexed list of chapters.