Wednesday, December 14, 2011

B is for Balance

Balance. I would have to say that that has probably been one of the hardest aspects of life with special needs children. Oh not that you don't balance their lives. Between therapies, doctors, school, "typical" activities and just plain doing nothing, we all seem to be able to balance our children's lives. What I am concerned about when I speak to many parents of special needs children is the ability of the parent to balance their lives.

Yes, when you have a child your obligation is to make sure that that child has every advantage in the world. Yes, as parent you have the obligation to provide, nurture and support your child as they grow, develop and mature. Yes as a parent you have the obligation to ensure that your children thrive.

The problem that happens though is that we forget that we too are entitled to grow, develop and thrive along with our children. You do not cease to be a person because you are a parent. You do not cease to be a person because you are a parent of a special needs child. You do not cease to have your likes, dislikes, needs and wants as well.

This is when the balancing becomes important. You need to find the time to remember that you too are a person. Now do I speak from experience of being able to balance my life? Absolutely not. I speak from experience of NOT  being able to balance my life. I speak from experience of demoting my own importance. Read this mea culpa to see how sorely lacking I am in this regard.

Listen it is not that you relegate your obligations and the love you have for your child to the back burner when you do something for yourself. It is merely making sure that you remember your own humanity. Now what exactly am I talking about?

What I am talking about is that YOU are allowed to go with a friend to get a cup of coffee without the children just like parents of typical children do. You are allowed to have lunch, go to a movie and even have a date with your spouse. I am talking about reading a newspaper or a book that has nothing to do with autism, but may be part of a hobby that YOU love. I am talking about that it is OK to get a manicure and a haircut. It is OK to buy yourself some makeup if that makes you feel better. It is OK for you to go for walks, exercise and eat food that you enjoy, not just eating the leftovers from your child's meal. It is OK that YOU are not subsumed by your child's special needs. It is OK to still be YOU.

One of the first posts I ever wrote was about taking care of YOU. I repost it here:


One of the most important subjects concerning your child is you. You must take care of yourself. It was the first thing the therapist said to me when my oldest was diagnosed. You will do your child no good if you are unhealthy, stressed and depressed. I guess she had noticed the state I was in. Years had gone by without an understanding of what was wrong. He had had so much trouble in nursery school, the pediatrician had no idea what she was dealing with and the public school system where I was had bullied me into removing him from the kindergarten class. I couldn’t find a private school that would take him.(15 years ago the rights of disabled children weren’t so well known and I had no idea what he was entitled to.  Today it is a different story. Not only do I know the law, but there are the websites, chatrooms, and info boards to turn to. Thank God for the internet) I was a wreck.  Part of my problem did get solved because we moved to a school system that followed the law without giving the parents a hard time. (Yes, the debt we incurred was enormous. But at times, life is what it is and anyone who tells you to save, save , save never had a special needs child) .
Here is a list of items you should always be aware of for yourself:
1. EXERCISE. This reduces stress. If this can help then maybe you won’t have to do the anti-depressant route. I can’t tell you how many moms I know live on SSRIs
2. NUTRITION. This is not just for your child. You need a balanced diet to remain healthy. Eating the left over grilled cheese will not give you the strength to work through problems and confront the issues you face.
3. DOCTOR VISITS. Make sure you see your doctor. Go to the gynecologist, dentist, family doctor for regular check-ups. If you do not catch issues before they flare up you will be of no use to your child. Remember, the teeth are the root of your body. Tooth decay has been linked to everything from headaches, to heart disease. Heart disease is the number one killer of women.
4. HOBBY. Have a hobby. Something that makes you happy. I had been crocheting, then took up needlepoint and now I knit. The crocheting and knitting were very productive. I make blankets for ProjectLinus www.projectlinus.com. This is a nationwide organization which gives out blankets (crochet, knit, quilt, etc) to children in hospitals, foster care or to TAPS  www.TAPS.org  which is a support organization for children whose US military parent has died in war. I can’t tell you how gratifying it is when I get the newsletters telling about the thousands of blankets given to families for their children. It also has the added benefit of keeping me grounded and recognizing what is really important. Update: I also read books having nothing to do with autism but are historical novels about England; I do blog obsessively about politics; I tweet all the time; I even every once in awhile work on that long lost novel I have tucked away in the back of my head. Some parents crate jewelry; paint; mold clay; join book clubs, etc. Something to remind yourself that you have interests of your own.
5. GO OUT. Go out with your spouse or friends. I see friends for lunch. I meet my sister for a Saturday without the family and my husband and I have Home Depot dates. It is important to do something fun without the children. It is also important for your marriage. I know marriages suffer terribly when a child has this disability. I also know that I am one of the lucky ones with a husband who could eventually deal with his children’s problems and understood that it is about them and not him. But we also do not go out to dinner, we rarely see a movie, we spend time together running errands on the weekend. It is the time that counts, not what you do.
          I also never made too much out of occasions. He has the type of job that he basically works 24/7 and would work 27/8 if that was how the world kept time. Make sure that your emphasis is on what is really important. How does he treat you, does he just hand over his paycheck because you pay the bills and take care of the children, is he there for the children- spending what little time he has with them helping them with issues,  does he understand what he needs to do for them and most of all does he make sure that his side of the family does what the child needs and gives them no choice in the matter. Being home for an anniversary instead of the office is not really what is important.
6. PRIORITIES. Keep your priorities straight. Find support groups either in your town, school or county. Join a religious center for support. Sometimes they have support groups for parents of special needs children or there may just be someone to talk to. Check into the PTA in your school district, they may have a special needs network. Talking to others will help you remember what is truly important during some of those times of sadness. Update: Join us at The Coffee Klatch and Special Needs Talk Radio for support. We have found that it is not always easy to get to a support group meeting but twitter and social media is a terrific way to be part of a community that understands you.
7. VOLUNTEER. Help someone else. ( Project Linus, helping with the PTA, going to the local hospital, united way, junior league, religious charities, etc) This will also give you a good perspective on others realities. It never hurts to get a swift kick in the butt when you are feeling sorry for yourself.
8. ASK FOR HELP. It is not a sign of being an inadequate parent to ask for help. Ask a relative, friend, husband to watch the children for awhile while you decompress. Ask the school for ideas and get a doctors idea for help and support. Go to the county or social security to see if you qualify for services. Find out what is available in your area for special needs children  either from the county health office or the local autism chapter.
9. WORK. Most women have to work, especially with the costs associated with special needs children. You know what. It is OK. It is also OK to enjoy your work. It is also OK to be glad to be at work. It is also OK to acknowledge that it is not easy to organize everything your child needs while you are at the office. It is OK to say this is hard. It is OK to acknowledge that we have been fed a load of bunk about having it all at the same time. No-way no-how especially with special children. Acknowledge that you are doing your best, that this having it all is just nonsense and that you are more than adequate, you are great!
Lastly and most important: it is OK to be scared out of your mind.  Acknowledge it, embrace it, defeat it! Yes you can! 
You are important. Don’t forget about your self.
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Balance... it is not easy..quite frankly it is a bitch. No not like Embracing your Inner Bitch at all, but the kind of bitch that drives you crazy if you let it and can really screw with your world. The trick that I have come up with is to acknowledge that it is a bitch. Look it straight in the eye and say...today I am gong to shower. 


Until next time,


Elise


I came across this Adele song and it struck a chord. I thought it would make a good ending to this post. While the song bespeaks of a lost love, personally I think it can also mean finding your lost self, which has been submerged into the world of care, fear and, warrior-parent status... In the end Adele does not find her lost love or who she thought he was. However, it does not mean we can't Set Fire to the Rain and rediscover ourselves for who we truly happen to be. In fact what we find in the end, is a realization that we have an inner strength beyond anything we ever thought possible.