Struggle and Triumph - Mother and Daughter

I am the proudest mother in the auditorium. I sit among many other proud mothers, fathers and guests. It is my daughter's first ballet recital. I watch my daughter dance onto the stage with determination, pride and grace. I am in awe of my daughter.

My daughter, Lisa, is 30 years old. She is a fighter. She has a congenital muscle disorder. Her ballet class began as a substitute for traditional physical therapy. It has become therapy for her spirit as well. I sit in the front near the stage and I think back, back through the years of her life...

Her story began in the wee morning hours of February 19th, 1974. She entered the world following a full-term, unremarkable pregnancy. Lisa was a healthy infant weighing in at a chubby eight pounds eleven ounces. She appeared normal in all ways. Lisa was my second child. Her sister was four at the time of Lisa's birth. During infancy, Lisa had a minor incident of swallowing difficulty that quickly subsided. For awhile, everything seemed sunny and bright in our lives. Soon, however, I began to notice that Lisa could not hold her head up as well as other babies her age. She seemed almost like a rag doll. Her developmental milestones were becoming delayed. Lisa finally rolled over on her own at eight months. Soon, she was nine months old and could not sit up. I began to worry. When I brought my concerns to our pediatrician, he said that I should not compare my two daughters. So, I waited.

However, I truly believe that mothers know when something is amiss with their child. Lisa finally sat on her own, but leaned uncomfortably forward. Her arms and. especially, her wrists were noticeably thin and weak. Around her first birthday, we focused on crawling. Her sister tried demonstrating how to crawl. We had no luck. Lisa's arms could not support her weight. Now, I was past worried. Back we went to the pediatrician and he still insisted that we should wait and see. At this time, the doctor mentioned "hypotonia", a word I had never heard before. Hypotonia means weak muscle tone. Hypotonia would become the enemy. Wait and see was not one of my strong points. Shortly before her first birthday, I began to notice Lisa's eyes were rolling around. So, the first specialist on our long journey would be the eye doctor. Lisa has gone to the same ophthalmologist for 26 years. He became a great friend and supporter. Lisa's eye muscles were also weak from hypotonia.

To this day, she can only focus with one eye at a time. We celebrated Lisa's first birthday and still, no crawling, standing or walking. Her neck and arms seemed weak. She was alert and responsive in other areas. Panic was setting in. Urged by my relentless questions of when, why and how, Lisa's pediatrician was finally ready to take action. We were on our way to St. Christopher's Hospital for Children in Philadelphia. We saw several specialists and blood tests were run. We did not get a real diagnosis at that time. They said she was developmentally delayed in fine and gross motor development and appeared hypotonic. I heard the hypotonia word again! They explained that she had weak muscle tone in "all" her muscles.

At age two, Lisa was referred to our local Easter Seal Society where she received physical therapy and began making slow, but steady progress. Easter Seal's program literally rescued us from despair. We made many more trips to St. Christopher's Hospital receiving no additional information. At one point, a doctor told me that she might never be able to read. Of course, I was determined that Lisa would prove him wrong. She became an avid reader. At age three, Lisa was tested cognitively by Easter Seal's psychologist who was on the staff of Temple University Hospital. He told us she was about six months behind the norm. He informed me that she could begin East Seal's preschool on a trial basis for six months. I wondered immediately what he meant by trial basis. Did the psychologist think she would not fit into the program? I really let my imagination run away with me and wondered what I would do if she could not attend Easter Seal's school. Lisa began school and thrived and I received much needed support from the staff and a wonderful group of parents. After one month, the school psychologist let me know how great she was doing and her placement would be permanent. Along with preschool, she received physical, occupational and speech therapy. She made great strides but never did master crawling.

It was very difficult for Lisa to speak as her facial; mouth and tongue muscles were very involved. Her tongue protruded when she was tired. I learned that she would need intensive speech therapy. We, also, noticed that her head tilted to one side and that one shoulder was held higher than the other, this due to curvature of the spine. This has left her with a chronic neck problem. Also, one toe on each foot protrudes slightly. Despite all of the obstacles in her path, Lisa remained a healthy, happy, cute little girl. I began taking her to clinics at Easter Seals to see their specialists. At one of these clinics, held while she was in preschool, we got the diagnosis of benign hypotonia. In other words, she had weak muscle tone that would not get progressively worse. She remained at Easter Seals through kindergarten. A few months before her fifth birthday, Lisa walked across her classroom floor to see Santa Claus. Everyone applauded her and I could not contain my tears of joy.

Around this time, I was divorced from Lisa's father and soon remarried a wonderful man who adopted both my daughters. With my new husband and his three daughters; Lisa, now, had a large caring family and extended family. Bob was wonderful with Lisa and fought her battles right along with me. Our next challenge was the public school system. School was a never ending battle for Lisa's rights and best interests versus the school district's lack of time, money and flexibility. My husband and I became advocates for Lisa. Our request that an extremely heavy bathroom door be modified for Lisa's use, in turn, helped many of her classmates. Many times, we felt that teachers just didn't want to go the extra half-mile for Lisa. And more times, that not, the school staff had not even taken the basic effort of reading her file.

Middle school was her most discouraging time and mine. Children at that age can be very cruel. Additionally, at the start of middle school in 7th grade, Lisa was placed in the same class with children having severe emotional and behavioral problems. Soon I discovered that this class had only one reading group which was at the first grade level. Lisa could already read way beyond that level. I told the special education administrator that this class was totally unacceptable for Lisa. Her teacher and the administrator disagreed with me.
This was a very stressful time for us. I believe that reading is a fundamental tool for life. If you can read, your horizons are limitless. I finally convinced the school psychologist to help me. But, It took three months to move Lisa out of this class.

In high school, the attitude of the other students improved. However, we soon found that Special Education in high school did not include your basics such as; history, geography, English, spelling, science, math or discussion of current events. In our school district, the emphasis was put on obtaining employment after high school in the food service industry. I fought to have Lisa mainstreamed in several subjects. I felt that she should have every opportunity to reach her own potential not the school district's idea of her potential. She did very well in these classes which contributed much to her self-esteem. However, she received little or no support from the special education staff. Several teachers had discouraged our endeavor to have Lisa mainstreamed and voiced their opinion, in Lisa's presence, that she would fail. The lack of appropriate placement, lack of individualized academic goals, and a discouraging teacher attitude cost Lisa a great deal. Despite all the problems, Lisa graduated from high school with her class and attended the senior prom.

I am a firm believer in continuing education and am still purchasing educational software for Lisa to make up for the school district's lack of emphasis on basic academics. Lisa loves to read, loves history, and speaks out on issues relating to the disabled. We, determinedly, include Lisa in family discussions of current events and political views.

In 1997, we took Lisa to the Hospital of the University of Pennsylvania for an updated exam and genetic testing. Her doctor was a neurologist/geneticist. He confirmed her diagnosis as Benign Congenital Hypotonia (BCH). She was the first adult he had ever seen with this disorder. He told us that doctors normally see babies born with this disorder. Usually, the disease worsens and the child's weak heart and lung muscles collapse before their second birthday. However, our neurologist feels that since Lisa has continued to grow stronger that her disease will remain benign. Lisa's genetic testing was negative, however, that does not necessarily mean that this disease is not genetic.

Far from it. Some distinctive attributes of this muscle syndrome appear to be familial. Lisa has a nasal sounding voice with a high palate in her mouth and, after examination, so do I. I very much wanted to pursue the cause and the genetics of this disease. Therefore, our neurologist sent Lisa for a brain MRI. Through this, we discovered that she had a tiny area in her cerebellum that was empty. It is the precise area of the brain that controls muscle tone and fine motor development. The neurologist suggested that I should consider having a brain MRI which I did. My MRI was negative. Officially, the geneticist would neither confirm nor rule out that this disease is genetic in nature. However, he led us to believe that Benign Congenital Hypotonia is genetic. Lisa and I both support stem cell research and feel hopeful that we will soon see great progress made in treating brain and spinal cord injuries and malfunctions.

Today, Lisa is a thin young lady weighing approximately 100 pounds with a thin face. She has speech and fine motor impairments. However, she wanted to work and we did not want her sitting at home with nothing constructive to fill her time. We received help from the PA Department of Vocational Rehabilitation. They arranged for her to have a job coach to take her on interviews, help fill out applications and generally run interference with prospective employers. Her job coach became our good friend.

Lisa works at Blockbuster Video part-time, four days a week and loves her job. Her ballet lesson once a week is a high point for her. Lisa has been a bridesmaid in all of her sisters' weddings and helps care for her 13 nieces and nephews. Her social life is lacking and transportation is sometimes a problem. She and I both get disappointed, frustrated and even angry. So, we try to take a break from the problem and then continue our struggles again. We do not recognize quit or give up.

I will continue to support community, school, state and federal programs that help Lisa and others like her. Lisa and I feel that we need to demand rights for the disabled and support continuing research with the hope of making the quality of everyone's life better.

As the mother of this extraordinary prima ballerina, I have had many wonderful, life-altering experiences and met many remarkable people. It has been extraordinary! This is our story. Lisa and I hope that it will help someone else.

For More Information:
Department of Neurology
Hospital of the University of PA
3400 Spruce Street
Philadelphia, PA 19104

Easter Seal Society
230 West Monroe Street
Suite 1800
Chicago. IL

The Benign Congenital Hypotonia Site
http://www.lightlink.com/vulcan/benign

Donna Katzmar is the mother of four adult daughters and grandmother of nine. She is an activist for "special" needs children and adults.

Are You the Boss of Mom and Dad?

How much do your aging parents appreciate you raising the subject of them not managing life so well? As much as the cat wants to take a walk with the dog? As much as you want a pet tarantula?

Well, let me put in this way. Do you remember how much you enjoyed that sex and virginity talk with Mom when you were fourteen and she was suspicious? That's pretty much how much your parents want you to talk to them about age, health and self-neglect.

No-one wants to have interference from their kids. Certainly no one wants to admit that they aren't aging well. And inevitably, they probably hear criticism in you even raising the topic.

So, that is why you approach this subject gently, kindly and without reproach. And did I mention tact? Oh yes, and taking stuff on yourself.

Now some parents are such open people, so self-aware and unafraid of admitting their life circumstances that there will be no problem at all.

"Why, son, we're so glad you mentioned your concerns about us. We were just going to talk to you about what we need and can't do any more." There's a couple of sentences rarely spoken in the inter-generational talk realm.

No, you need lots of soft-soaping here. One reason is that your parents may actually not be aware of their loss in function. Two is that, if they are, they even more don't want to talk about it. The underlying feelings here are often their shame, their fear, their growing awareness of becoming more helpless. None of which you enjoy as feelings either, right?

So you approach this as a way of building them up, not as tearing them down. It's true when they are stubborn, disbelieving and dismissive, then adult children often do feel the urge to take them down a peg or two by proving everything they're afraid of. So, since someone has to be the grownup, that would be you and your siblings.

You might want to share your concerns with them first. To get a reality check of what you're seeing. Then you could usefully get together with siblings and any other family members or even neighbors if they're very close to your parents. That way, you can fugurew out the major concerns and begin making a plan.

Unless your parents are in real danger from incompetence to stay safe and live healthily, then start with a few extra nice inputs into life. Take meals around, have someone help in the house. If they protest, here's a way that often works.

You say,"Gosh well gee, Mom and Dad, I know you say everything okay, and it probably is, but I just worry about your guys. You've done a lot for me and I want to do things for you now. "

You can choose your own words but here you are emphasizing your love, your desire to be a good child and you wish to enable to have a great style of living, blah blah blah. Why? Because they will only accept your help when they feel safe with you, respected by you and loved by you.

Otherwise, they will fight you all the way.

Frena Gray-Davidson, Alzheimer's caregiver and author of five caregiving books, including her latest book "Alzheimer's 911: Hope, Help and Healing for Caregivers", available at http://www.amazon.com. Frena teaches care families and professionals to decode the language of dementia and achieve successful behavior interventions. Go to her website at http://www.alzguide.com/ and sign up for her free monthly online newsletter for all involved in dementia care. Email her at frenagd@gmail.com.

Mother and Sons - The Relationship Between a Mother and Her Sons and How it Changes

I was one of two girls so never got to witness the relationship a mother has with her young son. I am now a mother of 3 boys (the eldest is my stepson) and am learning how to develop a loving relationship with my boys. By reading books and through experience I am seeing that the boys go through stages and their relationship changes with me at each stage. Here is what I have learnt so far.

Newborn Stage

The very first couple of weeks of their lives I think that the boys did not really mind who was cuddling them/feeding them as long as they were warm and secure. If it wasn't for the fact that I breast feed I think they would have been quiet happy to go to anyone to get their food and be settled. However what I noticed personally was that I had a strong desire to be with them at all times, I was deeply concerned about leaving them with anyone and felt that I had this intuition where I knew what they wanted and could comfort them quickly.

6 months old

The relationship started to change here I feel, actually could have even started earlier like around 3 months. The boys became harder to settle at night and you could see them looking around the room if I had gone anywhere, although they still were quiet happy to be with someone else

1 year old - 4 year old.

Now is where I could really feel the boys starting to need me as their mummy, they cried when I would leave the room or leave them with someone. When they were hurt they cried out for me and when they wanted food or to be changed I heard the cry for Mumma. My eldest is my stepson but this connection/need for a female parent or me was really strong at this age. He gravitated towards me and poor daddy was on the outer for a quiet a few years. My youngest are still in this age bracket; although they love their daddy and do go to him a lot you can tell that they are really still very dependent on the mother.

4 - 8 years old

Here is where I have noticed a huge change with my stepson. No longer does he hang for my attention but it's all about the daddy now. He looks up to him and wants his dad to play with him. My relationship with him as moved slightly now I'm still important to him as a carer and someone to play with but it seems that he is more likely to want to impress his dad.

Teenagers

Well I cannot truly comment on this stage yet as I have all of this to look forward too!!!!! But from what I can gather and from what I have read, and also being a teenager my self I think that at this time the boys really look to their peers or role models for guidance. The mum is still there to look after them - when they want it- but they are busy trying to establish themselves and find their independence. I think this is a hard stage to go through with your children as you have to let them go a bit but at the same time you know they may not make the wisest decisions. I guess the relationship between mother and son s here is more one of mutual acknowledgment that no matter what they love and respect each other.

Adults

Again I'm not there yet but what I hope for is that as adults my sons will still look to me for assistance, friendship, and a safe house somewhere they know they can always go too. I think it will be truly amazing to see your children grown up and see what type of husband/father they make.

So I think that as a mother although sometimes it may feel that you are not the person your son wants to predominately be around, you are always going to be part of their support network. It's a matter of being able to shift with the times and adapt to the age that your son is at.

By Sonya Oyston

mother and sons

bringing up boys

How to Recover From Burnout

If you have ever experienced burnout you know how difficult it can be to get over - especially if you are still working. Here are a few ideas to help you work through the recovery process. The theme underlying all of these suggestions is that you must be good to yourself. No one else can or will do that for you.

At Home:

• Eat properly - 6 small meals a day is ideal but be sure they are balanced and low calorie
• Get plenty of sleep. Quality is better that quantity. If you need help sleeping see your doctor. You can't recover if you are exhausted.
• Get plenty of exercise. It does not have to be hard exercise even walks are good for you (and the dog!).
• Get out in the fresh air as much as possible.
• Simplify everything you can.
• Live under your means and get rid of financial worries.
• Clear away clutter and you will open your mind to new ideas.
• Don't be a perfectionist. You are not Martha Stewart so relax about the house and cooking.
• Be sure chores are spread out evenly. Don't do it all yourself and don't try to do it all in one day.
• Learn to meditate or do yoga.
• Listen to soothing music instead of the television.
• Take up art or reading for relaxation.
• Listen to relaxation or visualization tapes.
• Get massages to relax tension.
• Journal to release emotion.
• Take soothing baths and use exotic oils and fragrances.
• Get help with the kids so you have some "me" time.
• Laugh
• Play

At Work:

• Break your tasks into small pieces and have a mini celebration when you compete each one.
• Don't do everything 100%. Learn when 80% is good enough.
• Take breaks often.
• Get up and move around.
• Eat lunch - not at your desk.
• Go outside and walk in the fresh air.
• Guard your "self" time. Do not have an open door policy.
• Plan specific times to return phone calls and emails.
• Leave your work at work. Do not take it home with you.
• Try to eat 6 small balanced meals a day.
• Avoid sweets and chips.
• Do exercises at your desk to release tension.
• Take regular vacations.
• Take a day a week of for a while to give yourself a long weekend to rest.
• Decide what must change and make an action plan to accomplish it.
• Don't try to do everything yourself. Learn to delegate and remember the 80/20 rule.
• Engage your sense of humor.

If you can't get yourself back on track with these ideas get a coach who can help you. Be sure to do thorough screening so you get someone who is well credentialed and well trained. You want the best for yourself.

About the Author:

Lynn Banis PhD, MCC is known as America's High Performance Coach. She specializes in helping executives and entrepreneurs make the most of their opportunities and potential. Her years of working with small and large businesses has given her a depth of knowledge that is invaluable to her clients. You can reach her at http://www.discoverypointcoaching.com or lynn@discoverypointcoaching.com. Also check out Lynn's other businesses: Coach Academy Texas, a cutting edge coach training company; and Turnkey Coaching Solutions, a coaching program management and contract coach staffing company.

What to Do with Kids You Birthed, Babysit or Just Want to Get Rid of

You didn't realize just how stressful caring for children could be when you would pass them on the street and smile. "How does she do it?" You may have thought this before you had your own or someone else's children, "Good Lord! They are driving me crazy!" now that the shoe is on the other foot!

Well if you are making the mistake of not giving them enough to eat, to do, and most of all time to sleep, then that is only part of your battle! Throw in a sick, miserable "I want my mommy! I want my daddy!" type and you just might be walking on a fine line of abuse. "Did I just say all those bad words to a child! Did I just man handle one! OMG! " Little junior and darling daughter just brought out the worst in you, didn't they? Well never fear there is always an apology, a pill to calm your nerves, and even better a way out called, "vacation" (even if it means closing your door and giving yourself a long time out.)

Okay so what to do with the spoiled brats? Well first create a plan that includes everything in your home that is considered kid-friendly and match the children to each one. Younger ones can play computer games, build blocks, color in books, scribble on paper, watch a video or exercise, etc. If you have older ones teach them how to do things such as tie their shoes include chores (more on this later,) do worksheets at a higher grade level, and have them participate in outdoor activities like bike riding, dance lessons or help you with landscaping.

When you create a comprehensive plan for yourself to do with the children complete with a quiet time, you will post a similar plan decorated with bright colors and stickers somewhere in your home for all to see (including the Mister.) That's right, he needs to be helping you! But some women will say, "but he is the breadwinner!" So what he works, you work too! So what he needs to watch the game, you wish you could watch a TV show uninterrupted too! Plan accordingly. Explain to him how we all need to step up to the plate. You both created these children; therefore, you both need to help raise them. Besides you just might need a gym teacher -- he could be that. But what if there is no additional help, you will need to find it. It comes in all shapes and sizes, some with price tags and others with none. You can visit a park and pick the brains of other mothers, sign up for a gym membership with a daycare, find programs that don't cost much or are free via YMCA or welfare office. You can enlist family and friends. Trade off days such as you watch your children and theirs one day and someone else watches yours another.

Children need to be busy and when you live in a house where there is no structure, they will get on your nerves. Computers, gaming systems, worksheets, activity books, painting, music lessons, creating their own board games, and other things keep them busy so make sure they are doing a little bit of everything everyday until they exhaust themselves. Don't allow them to come to you with statements like, "I'm bored!" Give them your papers and old photos to scan, have them help you organize some stuff in your home, give them a camera and let them take pictures of things that you may need for insurance purposes, a bragging book or something else, have them memorize scripture in the Bible, instruct them on how to dust, put dishes away, wipe walls, vacuum, cook, and other chores. What if one day you become ill, your children (or someone else's) will know what to do without you telling them. Give them something nice for doing a job well-done.

There is more to having children besides wiping their butts and burping them once they are old enough to talk back to you. Teach them how to become independent and help others whether they are your children or someone else's! Some parents don't want their children to do anything but run around and "act like children" well in school they can't do it or anywhere else, might as well do the same at home. If they must run around and be free let them do it in a yard or at a playground. Hope this helps some of you who just don't know what to do with your children -- oh by the way I have one in my bunch that has a bit of a mental problem so I am learning to give him things that he likes to do to keep him out of trouble while watching what he eats. Herbal remedies and vitamins have been a help too for all the children! So if you have one who is hyperactive, a tadbit on the wild side etc. consider researching more about his or her personality disorder and what alternatives are out there besides prescription meds.

P.S. (Oh by the way a healthy bowl of oatmeal, cream of wheat, pasta with meat, or a thick, juicy homemade turkey burger and fries keeps them full for quite awhile, some will drift off to sleep -- hooray!)

Nicholl McGuire is the author of When Mothers Cry and Laboring to Love Myself on Amazon.com