Special Needs Spotlight: Cerebral Palsy
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To All Who are Broken
Parent Burn-Out is a legitimate and very real concern for those who have children with any kind of challenging issues.
Frequently, parents of children with special challenges will complain that they feel trapped, disappointed, over-committed, and increasingly unable to cope. They seem to have lost any satisfaction in the job of parenting their special-needs child. They can't find ways to relax and renew their energy for what is acknowledged by all to be a very difficult job. Parents are understandably exhausted when they find themselves with children so needy or so difficult to handle that they require constant monitoring. Especially at risk are those parents who have poor or nonexistent support systems. They can't seem to imagine any options for easing the constant pressure of their obligations and run the real risk of becoming more and more isolated. For those who are parenting the poorly attached or unattached child, the lack of emotional reciprocity makes things doubly difficult. For those who are parenting the neurologically challenged, there is the added worry that their child may never be able to live independently.
It may seem an oversimplification, but one of the most constructive things you can do in these situations is to re-evaluate any expectations you might have about your child. Unfulfilled expectations will only compound your feelings of being trapped and dissatisfied. It is frustrating to know that you are not being successful in changing those around you so they will behave differently
One of life's most precious gifts which evaporates the instant you become a parent is solitude. Even when children are trouble-free and absolutely delightful to be around, a parent is never "off duty". When children are especially needy and difficult to get along with, the absolute lack of solitude and privacy can seem like a relentless invasion.
All that emotional pulling and pushing can leave you exhausted and resentful. Those of us who suffer from the Superparent Syndrome are at particular risk from this problem. It's a lot easier to be a Superperson when there are no little people depending on you. It may be very difficult, but once again, you need to re-evaluate your expectations of yourself against the reality of your current life. Dependents are just that.....dependent, and they eat away at your energy, attention, focus, motivation, and lifestyle. That's not necessarily a bad thing....it just IS.
There is nothing written in stone that says we are only good parents if we subsume our own needs for those of our children's. My favorite statistic is that 85% of the benefit we have on our kids is passive. That means you can be a good parent even while you sleep! It's impossible that a person's lifestyle won't be changed by a dependent and there's no payoff in experiencing guilt because of the way you feel about that. You can legitimately experience grief and loss, regret, longing for a different kind of life, etc., but you've got to get rid of any guilt because it's singularly counter-productive.
Once you have a more realistic understanding of both the expectations of your children's behaviors and that of your own, you can then start the real effort if making your life, both physically and emotionally, more pleasant and comfortable. The key to the process is finding time for yourself and away from your children. Send the kids off to bed early so that all of you can have some private, decompression time in the evenings. There's nothing wrong with training children to leave your presence when you declare you need some "private Mommy time". It’s perfectly legitimate to set up these kinds of boundaries as a self-preservative measure.
I know people say that you should never remove yourself from attachment disordered kids, but I don't agree. There is something to be said for the fact that you are showing them you can go away but they can learn to trust that you’ll come back. Take private walks, go out in the garden and pull weeds after dinner or early in the morning, go into the bathroom and simply close the door for 20 minutes or so and read a magazine or a few pages of a book. I went back and finished college in order to save my sanity. Figure out a way to reconnect with old friends or cultivate new ones. The logical place to start is at church or temple. Get involved in something there once a week. The most important thing is that you start doing something for yourself. If it helps you feel more whole, take a private mental holiday and just do the minimum for about a week. These invisible mental holidays (you know you're doing it but nobody else does) have saved my sanity more times than I care to admit. So, the question is, how can you effectively pull-back? It's an individual decision. Will a shift in attitude be enough, or do you need some real private time in order to renew yourself? For me, it requires that I spend a lot of time in "solitary". I'm a gardener, so I always have the garden as an escape. I can be at home in case something goes amiss, but no one wants to come outside and pull weeds with me. It's a great place to hide, and weeds grow all year round!
Attachment disordered children may or may not ever be able to make a real connection with family. Neurologically impaired children are unwritten books and may remain so for years. Getting rid of preconceived notions of what should or may happen in future enables you to start each day without disappointment and it's a weight lifted off your shoulders. I myself, unknowingly adopted a child with alcohol-related neurological disabilities (ARND). My unfulfilled expectation was that I was bringing home a child who could compete on a level playing field with other children his age. As it turns out, he had significant disabilities with which he will struggle his entire life. It's a daily challenge for me as well as for my son. I have to continually remind myself that life with him must be seen in a realistic light. Am I somewhat disappointed with myself for feeling this way? Yes I am. Do I wish I felt differently? There have been many times I was plagued by that guilt. But then I consciously remind myself that he needs to be accepted AS HE IS. That's not to say it makes me feel any better about my feelings or the situation in general, but it does enable me to do my mothering job to the best of my ability, and that gives me a feeling of self-worth and accomplishment. Over the years we've both learned to accept each other the way we really are and to make the best out of what actually exists.
Many years ago, when we first took my ARND son to have a thorough evaluation at a developmental clinic, one of the clinicians was a social worker. At the end of our evaluation she told my husband and myself that so far we were doing almost everything right but one thing terribly wrong. We weren't leaving the children to get away together alone. She told us that the most important thing we needed to do was to line up some sitters so we could have at least one night a week to ourselves. My husband and I have no extended family to rely upon, so we had to make a concerted effort to do what she advised, but eventually we did find people who would come and stay with the children so that my husband and I could get away. So don't think that just because you have no extended family that it's impossible to find some help. Ask at church. Ask all your friends who don't have extended families what they do. Call a Nanny service. See if there are responsible kids at a local college who would like to sit. Make it a priority! It has saved our marriage. More importantly, it has strengthened our marriage. After all, when the children are finally and gone, who will still be there? Our spouses will still be there if we’re lucky. Let's not sacrifice our relationships with them when they are, ultimately, the most important (and potentially longest-lasting) people in our lives! They were here before the children arrived and hopefully they'll still be here after the children leave!
Avoid the debilitating burn-out that can come with parenting children with challenges. Acknowledge the difficulty of the job you’re doing. Rid yourself of counter-productive expectations about your children. Make sure your expectations of yourself are realistic and constructive. Find ways to have some alone time and make an effort to keep yourself renewed and nurtured. Re-assess your family priorities. Devote some extra effort to your partner in life. Reach out for help and support. Keep things in perspective but most of all keep it real!
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Building a Bridge
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Documents needed to adopt a child
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