Parents and Families

Living with Lowe Syndrome

VII. Parents and Families: Living with Lowe Syndrome
Few people feel prepared to face the challenges of raising a child, let alone a child with a disability. When the disability is Lowe syndrome, the challenges are many. Parents must deal with complex and frightening medical problems, with an often unfamiliar special education bureaucracy and with raising a child whose development is slow and erratic and whose behavior may disrupt family life. And, all the while, they must manage their own feelings of despair, fatigue, inadequacy, and fear for the future.

It all begins when they learn something is "wrong" with their child. This usually happens shortly after birth when they learn that their son has eye problems. Because most doctors are not familiar with Lowe syndrome, many families (especially those with no history of Lowe syndrome) experience long and frustrating delays before receiving the diagnosis and the beginning of treatment. The initial shock and disbelief is difficult enough without the added news that their child's condition is rare and little known.

After securing needed medical care, parents must turn their attention to the education of the child and his place in the family. Having a child with so many special needs places extra demands on everyone's limited supply of time, energy, and money.

A family can easily become socially isolated and emotionally drained, focusing all its attention and energies on caring for the child. Boys with Lowe syndrome are often warm and loving but they can also be distant and rejecting. They are wonderfully curious but are given to exhaustive conversation. Often happy and cheerful, they can also be obstinate and forceful in trying to get what they want and can provoke a crisis at any moment and at any place.

While parents continue to have emotional "ups and downs" over the years, experience helps them make the adjustments needed to meet the needs of their son, their family, and themselves. Experienced parents offer the following bits of advice to help new parents keep things in perspective and maintain a healthy and realistic attitude.

Become knowledgeable about Lowe syndrome. Learn as much as you can because chances are you and your doctor will be learning together. Reading this booklet and the LSA newsletter and talking to other parents will be a good start. If you have other children, they need to understand their brother's condition as well. They should know its name and the fact that it is not contagious. As they get older they should be told how Lowe syndrome is inherited and the implications for their own children. Also, share the information you learn with members of your extended family. Grandparents, aunts and uncles can be a rich source of help and support for years to come. Help to keep them involved and informed.
Try to find an early intervention program to provide the stimulation and assistance your son needs in the crucial early years. Remember that progress will be slow.
Listen to the concerns that other family members have and keep them informed. Involve the whole family in caring for the child. If you have other children, you may find yourself feeling guilty and torn because of the extra attention required by your affected son. Talk to your other children and help them understand that this inequity doesn't mean you love them any less than their brother. Giving them opportunities to help can make them feel grown up and an important part of the family. Siblings can provide wonderful stimulation and companionship and, because of their unique perspective, are sometimes able to offer surprisingly helpful suggestions.
Get to know other parents in the LSA. Even though you may be separated by hundreds or thousands of miles, you may use the telephone, e-mail or regular mail, or share letters in On the Beam and attend conferences. Your life will be greatly enriched by these mutually supportive and very special friendships.
Participate in a local parent support group. Getting to know other parents who have children with disabilities or chronic illness can help overcome feelings of isolation and lift some of the burden we all feel. In addition, a community group is a valuable resource in finding out about local programs and services.
Learn about the rights of people with disabilities. You can be your child's best advocate as well as an advocate for other children.
As much as possible, try to keep a sense of humor. Sometimes the most effective way of dealing with a difficult situation is to try to find something funny in it.
Understand that the many emotions you feel are normal, including grief, fear, anger, and despair. Help your other children understand that mixed emotions are normal and perfectly understandable. There is no right or wrong way to feel. What is important is how you choose to cope with your feelings. Fear and anger, for instance, can lead to paralysis or they can lead to productive action.

Words of Experience and Encouragement from LSA Parents

(The following are selected quotes from letters published in the On the Beam newsletter, and messages posted on LSA-Talk.)

Confidence in your ability to handle the challenge of having a child with Lowe syndrome can be found in the knowledge that other families have traveled the same path and have found ways to cope successfully.

On Feelings...
"Since his birth we have experienced every conceivable emotion."

"I can remember feeling so lucky that my son was very high functioning mentally when he was younger. I figured, if we have to have this Lowe syndrome, at least it is not too bad. As all of these nasty manifestations are hitting him and his kidney problem seems to be worsening, I don't feel so lucky anymore."

"My son is 2 years old. I have so many people come up to say what a cute baby. He still has a lot of his baby fat and because he isn't walking they assume he's a baby. I usually just smile and say thank you. I can never bring myself to get into the real story with strangers."

"When I see other children that go through horrible surgeries and almost die, but then they come out healthy and lead normal lives, I wish they could do that for my son. It is so hard to deal with most of the time."

"I am always running about going here and there and never can relax. I am wiped out, mentally more than anything. A friend told me to have a glass of wine and relax, so I am off to do just that."

On day-to-day life...
"From the age of two until time for kindergarten, I drove him year round 35 miles each way to the Rehab Center, hauling three youngsters besides in the summer."

"The visits to doctors and clinics and the surgeries and tests which drain even the strongest, are very vivid for me."

"My son's behavior was so bad in the mall a couple of weeks ago, someone called security. He was yelling, cussing and biting himself. The security guard came and asked what the problem was. I said, 'Well, we have behavior problems.' He asked my son what was wrong. He said he was hungry. I had bought some french fries and he wouldn't eat them. Anyway, I thought this man has NO clue. No idea at all. Looking back now, I laugh. Didn't think it was so funny then."

"I was thinking of putting him in a special center when he gets in his teens because I don't know if I'll be able to handle him on my own."

On dealing with doctors and other professionals...
"I always question the doctors. They don't know what we have to go through until they walk a mile in our shoes. So I always stress MY STRESS!"

"As brilliant as our doctors are, and as caring and honest as they have been, it can be discouraging to hear answers to our questions about Lowe syndrome by hearing 'we don't know'."

"I have shared the newsletter with everyone who cares for and works with him. It has helped a lot of people understand what I have been trying to tell them."

"We can't stress enough how important it is for parents to be firm about what they believe is right for their child. If you really feel something is not being dealt with properly, you have to let the professionals know."

"Our medical insurance refused to allow refills on any of my son's meds. They said the doctor has to call and authorize them again and they would like him to choose different meds because his are too expensive. So, in addition to the roller coaster of so many problems we need to watch out for, we need to fight with insurance companies too."

On siblings and family life...
"My normal son is having difficulty sleeping in the same room as his brother. He is afraid of seeing him seize again, and he is afraid he will have seizures and throw up as well. The school called today because he was telling the teacher about his brother and burst into tears. He is seeing a school counselor and we are helping him here at home too."

(From a sister) "As his sister, I had problems, frustrations, and yes, joys, which I felt no one would ever understand."

"Just went to our second daughter's high school graduation, so even with all we go through with our boys, life still goes on."

(From a sister) "Because of my biology class, I have lots of questions and look forward to acquiring answers to them. I thought I would share this information with my biology classmates. Everyone loves my brother and who knows, maybe someone in the class will be able to find a cure."

On parent-to-parent support...
"I was so happy to learn that I am not totally alone. It makes me feel very warm inside to think we have found a new 'family'."

"I am so grateful we have each other to lean on. If there wasn't such a thing as the Internet I think I would go crazy! It has helped so much to be able to talk with everyone."

"I just wanted to thank everyone for their letters of encouragement and support. I treasure every piece of advice that is given or shared in our support group. This is a very stressful time. Without you guys I don't know how I would cope. It helps immensely that there is actually someone out there who knows exactly what we are going through."

"I was very discouraged and very upset because I felt so alone in this. This was something new for us to deal with and I was frightened. I wrote a letter to the list and shared our day with you. I have gotten back many letters of support, encouragement and love and it just overwhelmed my heart to know that there is so much love out there among other Lowe syndrome families to share with others."

On hope, courage, joy and humor...
"When people ask me how I am doing I almost always say 'hanging in there!' It may not be the strongest piece of rope but we're hanging in there, right?"

"Miracles don't pop out of the blue, rather you have to make them happen."

"For all of you who have doubts that your child will walk, don't! Because no one could have doubted it more than I."