Here are a few methods I have learned along the way to get the rest I need and have a little time to myself.
|FASD Parenting Exhaustion|
Getting Enough Sleep
This is probably the biggest problem faced by parents with children effected by fetal alcohol and it isn’t on any of the symptom lists. Children with fetal alcohol syndrome and FASD don’t seem to be able to sleep. And when they don’t sleep, we don’t sleep.
Melatonin has been a life saver in our house and for many other families deal with fetal alcohol syndrome. Perhaps literally. Before I discovered melatonin, our sleep lives were in shambles. At 11:00 when every other small child on the planet was asleep, my FASD daughter would be living it up. Loudly. She just did not seem to tire like a normal child. Night time, day time: she did not differentiate. It was common for her to stay up most of the night, sleep two hours and be ready to play. If this sounds familiar, your child might also be short on melatonin. (Check with your doctor of course)
Many doctors will also prescribe Risperidone to help FASD children sleep. I had much better results with the melatonin, but others find the Risperidone to be superior. Don’t be afraid to try medications for sleep. You both need a good night’s sleep.
Play and Walk Away
This a great tip I learned from Super Nanny long before I adopted my daughter with FASD.
It just seems to be a skill that is coming in ever more handy now that I have an FASD child in the house. We all know we are not like those lucky parents who can look at their child and say “Go play” when we need a break. Go play to an FASD child could mean anything from throw lego through the house to give the dog a ride in the washing machine. Some may take it even more literally and actually leave. Never use this phrase.
Set your child up with an activity that will take more than, say, 30 seconds. Sit with them while they begin the activity and play with them for a couple of minutes. Once they are having fun and become engrossed, walk away. Take a few minutes to yourself to read a book, catch up on some housework you haven’t been able to get to or simply bask in the joy of walking away.
If your child can’t be trusted alone, you don’t have to literally walk away. My daughter is FASD/ ADHD and 5 years old. Walking away is not always a good idea. Instead, we have our breaks together. I take her into my craft room with me, set her up with a craft on the floor and do my sewing at the table beside her. We use the same method for TV time. I set her up on the laptop with a kids show and earphones beside me, while I get to watch the big TV. It’s a small break, but it’s a break.
Routine and Habits
Having a solid routine can be a sanity saver in parenting the FASD child. For the fetal alcohol child, knowing what to expect from the day adds an element of calm that living for the moment can not. FASD children thrive on routine. It is much easier for them to follow the rote workings of a typical day than try to think for themselves what to do next. Any small unplanned event can send an FAS child into a meltdown. Be careful she does not become overwhelmed or overstimulated. A simple, calm, predictable routine can avert many an out of control behaviour.
If you haven’t created a routine for your child yet, it is actually very simple. Observe your child on a typical day and note what their own built in routine seems to be. If a routine seems to be ingrained, don’t try to change it. Work around it.
Note what needs to be done in a week. Try to do these things at the same time very week, in the same way. Add a small treat after each major transition. Follow up a doctor’s appointment or pick-up from daycare or school with a quick trip for a treat from the corner store. When possible, allow your child to choose their mid-transistion treat. Children with fetal alcohol disorders seem to need control. Giving them just a taste, along with a solid routine, can make a huge difference in the number of battles we have to fight each day.
Complete Kid Time
Speaking of control, it helps to give your child a short time each day to be in charge of you. Don’t just give just give your FASD child your full attention, give it to them in any way they like. If he wants to play teddy bears, play teddy bears. If she wants to make you over into a beautiful (or grotesque) princess, let her. Don’t tell your child how to play the game, just co-operate. This is their time to be in control.
Why does this make life less exhausting? I think it makes us as parents less authoritarian and more human to our FAS child. They don’t feel the need to control every situation if they have some time out of a day where you are purposefully giving them control over you. We are also modelling co-operation and listening during this time which the kids do seem to absorb and be better able to do later. This seems to work especially well in FASD children with an element of attachment disorder. It softens their need to control every moment.
Take Care of Yourself
The first rule of special needs parenting is “Take care of yourself first." It’s not selfish, it’s necessary. I never feel more exhausted than on those days when my daughter is running me off my feet, and I walk past a mirror and see....... a hag. Not taking the time to take care of yourself lowers your self esteem which leads to an even greater feeling of exhaustion. It can also make you resentful. It’s hard to care for and love a child while you feel like they are sapping the life out of you.
Taking care of yourself first encompasses more than just your looks. Take care of yourself in every way. Take vitamins, drink lots of water, get out with friends, enjoy hobbies, spend time alone with your spouse doing something besides talking about the bills and the kids. You need to be at your best to give your best to your child.
Parents with FASD children need time out and we need support. Support can come in many forms so choose whatever works for your family. Some parents put their child in daycare for a few hours a day and that works well for them.
Find a support group.The advice given by people who have been where you are is so much better than from those who have never parented an FASD child.
Online support groups are great but you might also like to get together with other FASD parents in person. The easiest way to find a support group in your area is online. Just google FAS support group along with the name of your town. You could also try calling your local social services or child protection department. Adoption agencies always seem to know what kind of support is available, too. Fostering, adoption and FASD frequently walk hand in hand.
Friends and family can be an excellent support some times. I say sometimes because unless they have also parented an FASD or other special needs child, they might not be sure how to support you. If I had a dollar for every time I’ve been told my daughter is spoiled, well I would have at least $20. If I had a dollar for every time I’ve been told to just medicate her that would be another $20.
Many people don’t seem to understand that FASD children act the way they do because of brain damage. This is not something we can discipline out of our children and medications don’t always work in the FASD child the way they work in others. People with little experience with FASD will not be aware of these facts, so if you find the support you receive from those around you feels more like a confrontation, keep looking. When you find someone who is willing to just listen and offer support without judging your parenting skills, even if it is a counsellor, that is your best support source.
photography by Ambro