Most every day I follow up with families I have met who have children with ASD/Epilepsy. I wish sometimes I had a jet and could just fly over to wherever you are and help out for a few days...but in the real world, that isn't possible. So, I thought I would make a list of the little things that always helped me make it through --and especially during busy months.
1. Keep a bag at the door. This bag should contain anything you need on a regular basis for your child, a days worth of meds, picture cards, sensory toys, favorite items, a change of clothes, diaper, wipes, and a favorite DVD or two. If you have to rush to the ER, you're ready, if there is another emergency- you have enough for a day- and the rest can be brought to you later...if you make a trip to a family members home, there are things for your child that they enjoy that will keep them happy.
2. Keep two copies of a list of your child's CURRENT medications in your purse. You'd be surprised how that in an emergency it comes in handy. Or if you are at the doctors office, you can just hand them the list to attach to your file--it saves time and you don't have to sit and spell them out for the nurses who are unfamiliar with Anticonvulsants.
3. Make a Procedure bag. Get a gallon ziploc bag and put the following in it:
*EEG wire (save some when they have one done)this is a great visual for kids so they know if they are going to be "plugged in".
*A "No No" - this is a small splint that covers the whole arm and velcros together-if they've had an IV, they've probably had one on- keep it. (some hospitals don't keep them and it comes in handy)
*Children's Anbesol (night time) you can put this on the area prior to a stick and it "numbs" it some to keep it from hurting quite so bad.
*Take pictures of your child in hospital situations and then keep them in this bag---when they see themselves in a hospital bed, they know what to expect. This is especially important for nonverbal children. (Also take pictures of their regular physicians, so they can anticipate a visit.)
*Anything that can help you and your child get through a particularly difficult procedure, put it in there ( favorite band-aids, a special toy, stickers they really like)
PUT THE PROCEDURE BAG IN YOUR BAG AT THE DOOR.
4. Keep a list of your child's daily schedule inside the door of your medicine cabinet. If something were to happen to you as a caregiver--somebody needs to be able to look at the schedule and be able to care for your child. This should include all med times and doses, any other medical therapies, nap schedule, and bedtime schedule.
5. Daily record. It is important for you to keep a log of your child's successes, changes in behavior, seizures, bowel changes, illnesses, and any medication changes. With epilepsy, when your child has breakthrough seizures the first question a doctor will ask you is "What has changed?" If you don't keep a record, you will have no idea.
These are just a few ideas, but were some of the most helpful to me in dealing with a chronically ill child. You never know where you will end up in a day, so being ready at a moments notice, will give you peace of mind and allow you to BREATHE. Taking a moment every day, just to yourself, even if it's just 5 minutes, can also make a big difference and can help you recharge.
Little things, and a little organization can make a big difference, for you and your child. Take the time to implement them and then you will be prepared for anything!!