Parenting and Mental Health
Some Thoughts on Staying Sane
Managing a disability like autism can be an unparalleled challenge. It is extremely important to not let yourself go over the edge as a parent. It is normal to go through a tremendous amount of mental and physical stress. Combine that with lack of sleep, a possibly inconsistent or absent support group, and the ups and downs of hoping for recovery, and you have a very, very complicated physical and mental challenge.Anyone who subscribes to various autism newslists will hear of horrible tragedies--parents going over the edge of hopelessness and hurting or killing their children. Most parents of autistic children understand to some degree the reasons for such a hopeless act. BUT THERE IS NO EXCUSE OR JUSTIFICATION FOR HURTING YOUR CHILD. If you are afraid of hurting your child, seek professional help. Consider putting your child in a residential facility or foster family. There has been too much of a negative stigma attached to residential facilities and foster families. This is not Hollywood. Real people, not monsters, staff most of these facilities. While some few may be horrible, most are quite satisfactory and some are wonderful. Don't let Hollywood's concept of the wicked "Institution" put you in a position where you feel either you or your child must die because you can't continue. Don't let other people guilt you into the all or nothing scenario. So many feel they must be either the Autistic Superparent or nothing. Your choices are not that narrow.
What is important to understand is that you will go through feelings of anger, depression, hopelessness and loss. You will mourn for the relationship you expected to have with your child. Allow yourself the awareness that these feelings acceptable. Then get over it. Get off your duff. There is so much hope out there. For some, raising autistic children is a two to four year sprint. For most, it is a marathon. You will establish a satisfying relationship with your child. Here are a few things to keep in mind.
Some Tips for Mental Health
- Stay Busy. If you delegate too much time to support staff, you will have more time to ponder the bad things. Busy people don't have time to be depressed. There is too much work to do.
- Do the fun parts yourself. If there is anything about your child's therapy or parenting that appeals to you or highlights your strengths, indulge yourself in it. Is there pairing and play that needs doing? You do it. Do you enjoy the organization and data keeping more than the one on one teaching? Do it. Are there things that have to be done that you HATE to do and can't avoid? Take a proactive approach. Learn as much as you can about those distasteful things. FInd new and creative ways to do them. Organize your life so that the distasteful things take up the least amount of time.
- Kill Guilt. You do your best. Every day. You are human. You fall short. Get over the mistakes and move on. Guilt is not helpful. And bad things and even bad consequences of our own stupidity shape our lives. We can't change that. Guilt won't help you marshall the energy to overcome and recover from what may be your own stupidity or shortcomings. Accept that fact that everyone is stupid or ignorant at one point or another. Just pick up and keep moving forward.
- There are only so many productive hours per day. Work with them, then rest. Don't try to make each day an all or nothing event. Pace yourself. Plan for the long haul. It will be one.
- Use Your Resources. You are going to be at the center of everyone's pity party whether you want to be or not. Are these people annoying? Are they helpful? Do you serve as that special person that makes someone else's life feel not so bad because yours is worse? And here you thought you were adding nothing socially helpful! Do these well meaning people say, "Is there anything I can do to help?" Here's a tip. Take them up on it. Let them clean your house, babysit your kids, buy you materials, lend you books. If you have to listen to them give you platitudes (Don't you LOVE it when they tell you that you must be SPECIAL parents to deserve such a child?), make them pay for the privilege. Put them to work! After all, you are making them happier just by showing them how hard life could be for them but isn't. Think of it as their payback for getting off easy! Swallow your pride. Tell yourself whatever you must, but accept help.
- Sleep. Whenever you can. You're gonna need it! Let extended family give you breaks to rest. Don't worry that they aren't going to be "doing the program" or "following the rules." Your child will survive better with a rested parent and bad babysitting than he will with a tired or cranky parent who is too controlling to give it a rest and let someone less qualified take over.
- Extended Support is Critical. If you don't have services near you, move. This means that you do what it takes to plunk yourself and your family down into the best of possible scenarios, which in my opinion is this: Move somewhere where the intervention services are free, and that has, if possible, proximity to extended family or a supportive church group. If you don't go to church, pick one and start attending. Church families can be so helpful in lieu of extended families. No one has to be alone. Truly.
- Take Your Medicine. If you are depressed, treat it. There are fantastic nutritional and pharmacological approaches to depression. Research carefully and decide which approach is right for you. You may NOT be depressed. You may just have a difficult life. If that is the case, take some steps to find joy in the little things.
- Don't Get Fat. Life is too hard to eat your way out of. Autism will not go away with enough potato chips or fried chicken. And you don't deserve to be fat with everything else going on! Letting yourself get fat will make you more depressed. I promise. Treat yourself to Weight Watchers if you start to get into trouble. If you get more than two pounds over your goal weight, that is the time to step in and turn around your diet (according to scientific studies buried somewhere on my harddrive). Or let Weight Watchers be a gift from someone. Because you are going to accept gifts, remember? Reality check--I blame autism related stress for a 25 pound weight gain over three years. Oh yes! And it could have been worse. But I joined Weight Watchers after the nightmare had largely subsided and lost it. If you can pull off going to weightwatchers while managing autism, you will find that the program is a perfect blend of cognitive support and behavioral therapy. If you look at it with an objective eye, it can help you do your ABA and cognitive support with your child better. Adapt the tools and strategies for Weight Watchers to your programs. Weight gain is an individual struggle almost all of us go through. Do your best. Don't give up. Keep up your hope like you do with everything. If anything else, you will find a fantastic support group there. For more information, go to Weightwatchers.com .
- Indulge your Needs. If there is an activity that releases stress for you (and isn't against the law or harmful to others!), indulge in it regularly. Make time for the bike ride, the book, the favorite TV show, the jog, the lunch with friends, the romantic encounter with your spouse. You need to run away in small doses to prevent feeling the need to run away entirely. Many the parent has stayed sane with a little self time every day.
- Wickedness Never Was Happiness. Don't make the mistake of thinking that pornography, adultery or any other instant gratification will bring you happiness. These are indulgences that will kill your ability to have a positive impact on your family and child. Indulging in needs is healthy. Indulging in sin is not. You will need the positive impact that clean and righteous living will give you. If you are enmeshed in sin, repent and get right with your faith or religious leaders. You will not make it through this trial well without Divine Help. Don't close the door on that help through sin.
- Be Happy with your Child. Your child will learn as fast as he will learn. Your program has an impact on his or her ability to learn but it is not everything. Innately, your child will learn at a different pace from anyone else's. Don't cause misery for yourself by artificially imposing your own expectations of a timetable. Just enjoy the process.
- Responding with Gratitude. Don't be stingy with praise for your child, your team or yourself. A child doesn't consciously do things badly when they are first starting out. Neither will you. Really appreciate those really awful first attempts at things, be they speaking, setting the table, getting dressed or vacuuming. Or for you, running a program and trying to get reinforcement just right. You and your children don't try to do poorly at things, you just will. But believe it or not, your children don't know how awful their attempts are unless you tell them. It is a bit of magic advice in parenting to enjoy and praise those awful attempts that are genuinely sincere attempts. Even if your child isn't visibly showing you big smiles yet. The good feelings you are building as you educate your child will build that great relationship you want. Over LONG periods of time and encouragement, these awful first attempts at things will transform into competence. It may take longer or take a different form with our learners, but the principles persist. Don't be a perfectionist with your kids or yourself. Little bits of heaven are found in the awful but eager firsts, seconds, thirds and so on. Don't refuse to enjoy it if they or you don't get it just right. You are cheating yourself out of lots of opportunities for joy.
- There isn't a magic age. Some children learn to speak in their teens. Some never speak, but wind up communicating perfectly through typing or sign language. Don't impose your expecations about what "success" is on your child. You will disappoint yourself, even if your child is not autistic. Just enjoy who they are and help them to reach their OWN potential.
- There isn't a magic level of social interaction. Some autistic adults are perfectly happy with limited social groups. Others want marriage and family. Help your child reach the social goals that he sets for himself, which may not be the ones YOU set for him or her.
- Try to keep it about EDUCATING your child, not changing them. At some point, you need to be delighted with the special child in your care. Most autistic people are the most guileless, sincere, loving, accepting, genuine people. They are a joy. You might not realize this until after they are potty trained, however. Sleeping through the night also helps.
- Favorite Books I have so many favorite authors, I wouldn't know where to start. My experience is that publishing houses often choose to publish the same types of books. Some will stick to romance novels with steamy, intimate scenes. Others will stick to romance with no physical intimacy. Others are uplifting. Others are only sci fi, etc. For Christian books or books with Christian values, try anything by Bethany Press. For romance without physical intimacy, try Zebra Regency Romances or any of Georgette Heyer's romances (not mysteries). Try to avoid books that make you depressed or anxious. Find books that help you unwind or make you feel good. For more personal recommendations, check out my book page (in development).
- Favorite Workout Videos There are a few ways to go here. First, and most cost effective, is to have a DVR machine, like Tivo, capture a workout show already broadcast on regular television. Then watch/do the workout when you get the time. If you are interested in commercially produced DVD's to keep you toned and fit, I can recommend all of Gunnar Peterson's Core Secrets. I tried Winsor Pilates and found each individual move so packed with effort that it was more pain than fun. For the same 30 minutes or more, with each individual move reasonable and interesting, the Core Secrets DVD's tone like nobody's business. And they are varied and importantly, NOT boring. I tried them on a tip from a gymnast friend--tiny, toned little thing that she is, and I had to thank her. You can buy the Core Secrets DVD's on TV, online or via ebay.
- Favorite TV Shows It was four years before the adults in our house could watch adult television of any kind. Since our schedules revolved around the children, all of our favorite shows to relax with disappeared from our lives. This wasn't intolerable, but there is a definite social and stress relieving benefit to having one or two shows that your family (or you and your spouse) enjoys watching together. Tivo or DVR made that possible again. It made us feel normal again. Like we had a life. So for the investment (Here in the US, an initial set up fee around $100, then roughly $6 per month), I think it is cheaper than prozac, if you get my drift. Plus, it allows you to record workout shows at your leisure, also promoting mental and physical health.