Time Away

Time away can be hard to come by as a parent of a child with special needs. Even if you do have close family willing to lend a helping hand when you are due to be gone, it can still come with a lot of prep and possible worry for how your child will do with the change in routine. If you don’t have a family member or friend your child is familiar with, then we are talking a whole other ballgame. Whether you are looking to be away only hours or if your scheduled for a longer trip and it is more like a few days away, here are some tips and tricks I’ve come up with to make everything a bit easier:

  1. A lot of prep on your part

No easy way to say it, going away can be a lot of work when you have a child with special needs. Remember what it was like the first time you left your newborn to be babysat; The long lists, everything packed or organized perfectly, all the stress? Well for us, we have worked away from that level of prep for short trips, but for anything that includes an overnight stay it doesn’t seem far from it. Everything is organized and sorted and laid out if possible. I stack their clothes for each day we will be gone. Damion is on a variety of supplements and since he can’t take pills yet I premix and prepare them all ahead of time. A bag in case they decide to go out is packed. If school is in session, lunches are prepped and bookbags are filled. Snacks and food are put out or at least listed for where they can be found. A detailed list is created giving whoever is watching them the info they may need and the big stuff is highlighted. We do all of this even though we personally have close family that assists us for time away. But with communication issues, having everything ready to go for the person helping out is important to us. Damion cannot tell them what they may need to know. There is a lot of stuff that we do behind the scenes to assist him that even people who are around us often do not have the ins and outs on, such as additional self-care items that he needs help with that are not typical for his age. Whether verbal or written, make your instructions detailed.  If your child is like mine, he can’t easily communicate what they are doing that is different even when it upsets him. The more the person watching them knows, the better your chances of making the stay smooth for both them and your child.


2. Don’t push the extra’s while gone

This one may seem a little counterintuitive. At first thought, you would think that keeping routines as close to normal would be the best method. For us however, we have found that it is not always the case. I generally cancel appointments for any after school therapy we have while we are gone. It is one more thing for the caregiver to try and take care of, and for Damion, not having the session altogether seems to go over better than me not being present at the session, for whatever reason. Obviously, your child may differ on this. Our goal is always to give the caregiver less stress when possible, so less on the calendar can help with this. This also means we may not push every little thing that we work on at homes as well. Our biggest example of this would be feeding. We often do mealtime in a feeding therapy style way where we push Damion to eat or at least try new foods. Generally, when we are gone, we allow the person watching them to just give all preferred foods. This is in some ways a break for your kid as well. We know first-hand that during a big change in our child’s surroundings, is not the ideal time to push on this stuff and can just lead to more meltdowns. 


3. If you don’t have someone to help

We are fortune at that we have not had to seek people outside our family for help when we have to be away. Granted, we also don’t try to go away a lot (not overnight at least). But for people who need the time away and don’t have those people to utilize, there are other services that you can look into, these are generally referred to as “respite services”.  You can seek private pay type respite services, but you may also be able to get help free through your county board of DD. States and counties may vary some on the types of services that you can qualify for, but I know personally my county has a program where we can select (or they can help you find) someone as a caregiver and negotiate pay (there is an hourly limit) for respite services. This type of stuff does have to be worked out ahead of time, so it may be a good idea to have it set up and in place so that it is much easier to use when you need it. We have personally never used it, but we did already work out someone for my son and have them in the system if we ever needed to use it. Keep in mind that respite services can be used for even small times away like if you need help while you go to an appointment or even to the grocery store.

You may be getting the gist that there is a main and overarching theme to each point that can be really summed up in just one word: Preparation. Like I said, being away can be a lot of work! Even with a preferred or familiar caregiver, I still find time away to be somewhat stressful. As Damion has gotten older going away for a few hours is not so bad anymore, but anything that has me away overnight comes with a good amount of worry. I worry about the kids; I worry about the people watching my kids. I’m sure I worry more than I should, since my kids really do love time with their grandparents, but I can’t help it. All the prep I listed above may seem like overkill to some, and maybe it is. But making it as easy as possible for the caregivers helps set my mind at ease too; that everything will go smooth and nothing will be forgotten. There are many reasons why you may have to be away; work, an event, or maybe you just need a break. The amount of time away may vary, but I hope (like suggested above) with enough planning ahead that you find someone you trust to help care for your kids, and I hope this helps make your time away smooth for all parties involved.