IF YOUR CHILD LIVES

 

My basic principle is that you don't make decisions because they are easy; you don't make them because they are cheap; you don't make them because they're popular; you make them because they're right. -- Theodore Hesburgh

 

For My Brother Ben

 

Blessings arrive in so many ways—

A cool breeze on a hot summer’s day

A laugh, a smile, a quiet retreat,

The feel of the earth beneath your feet.

They come packaged in the form of a safe journey home,

And in knowing that you’re never truly alone.

But of all these, gifts from above,

The most amazing is pure and faith-filled love.

It inspires us, moves us, gives us hope,

And is not a raft, but is a boat.

Its allies are truth and lessons learned,

And knowing some things can’t be earned.

Love is more than a word, it lies in proof,

Perfect examples live under my roof.

 

by Michelle L. Boisot, 18, (sister of Ben who was born with multiple disabilities)

 

Living with a child with difficulties brings both challenges and rewards.  You will learn how to parent by the experiences you have.  Your child will teach you skills no other child has taught you.

 

We had a lot to learn about caring for a "heart baby" --  but, all in all, it was not very difficult. There were feeding issues and we had to rent an oxymeter to occasionally monitor her oxygen saturation levels. All of this I learned how to do quickly. Even though our insurance provided home nursing, I cancelled it, because there was nothing that the nurses did that I couldn't do, and I have no formal medical training whatsoever. (Monica, mom of Celine who was born with hypo-plastic right heart syndrome)

 

Your journey can be easier when you learn from those who have walked similar roads.  This chapter and the next will share some of these parents' insights.

 

For awhile I heard a lot of stories on TV, etc. about how hard it was to give birth to a disabled child and therefore abortion needs to be legalized to prevent that anguish.  I would always talk back to the TV and say, "But you don't ask ME if it's hard--ask some parents." (Jennifer, mom of Nathan who was born with Menke's Disease)

 

DEALING WITH YOURSELF

 

The first person to deal with is yourself.   Much has to do with attitude.  You have suffered losses and disappointments.  How do you want to live from now on?  If you decide to be positive, you will be.  If you want to wallow in self-pity, you will.  No matter what happens with your child, you are responsible for your own emotional healing.

 

I can remember every doctor’s appointment, CT-Scan, MRI, shunt tap, every drop of blood taken from his body testing for all sorts of things, the smell of the hospitals, the smell of the medicines, the sounds of the machines, the sound of the doctor’s shoes as he walks towards Nick’s hospital bed, the pale look of Nick’s skin after major surgeries, the feeling of total vulnerability that I have felt seeing my son hooked up to every conceivable machine keeping him stabilized, the total helplessness, knowing that I could do nothing to help him with the pain.  As the mother of a child with a disability I can honestly tell another parent there is a pain that never disappears. It doesn’t ease as I foolishly convinced myself early on that it would. You learn to deal with it, you learn ways in which to cope. You learn to be strong when others are falling apart, when others can’t seem to lift themselves out of sorrow.  You learn that with time this surgery or this issue will resolve itself and pass. (Ashley, Mom of Nick who was born with spina bifida)

 

Your emotions may surprise you.  No matter how much you love your child, you may sometimes find yourself angry, resentful, or bitter for having a child with such difficulties.  Talk about these perfectly normal emotions with someone who can understand.  Try to get to the root of your feelings.

 

It's not uncommon for parents to discover that they need to forgive someone.  Spouse?  Friends? Family?  Their child?  Strangers?  Doctors?  Themselves?  God?  Forgiveness means disconnecting the replay button on distressing incidents and moving on.   Someone once wrote, "To forgive is to set a prisoner free and discover that the prisoner was you."  Only as you leave behind negative emotions will you be able to deal successfully with the future.

 

It's also not uncommon to wish your child would die or to wonder if you did the right thing in giving birth or seeking treatment. 

 

I remember at my lowest point, when he was around 3, and getting one diagnosis after another and the list of specialists was getting longer and longer.  I made my husband take time off from work to go to an appointment because I just couldn't bear to hear someone else tell me there was something else wrong with Alex. At that point I really wondered if I did right by him by asking for heroic measures in the NICU.  The thing that pulled me through was separating what my feelings were from how Alex acted. He has always been very easy going and interactive and happy. I was the one who was having trouble handling his medial issues.(Joanne, mom of Alex who has multiple disabilities)

 

Make a list of things you feel guilty about.  Talk over the list with another person.  Cross off the ones you're not responsible for.  Cross off the ones you can't change.  Make a plan of action for dealing with the rest.[1]  Remember that you did not cause your child's condition.  You made the best decisions possible.  You are doing the best you can now.  Guilt saps strength and hope.  Say good bye to guilt forever.

 

Promise that you'll relax. You're not Super-parent.  You can't control everything, and you are not responsible for everything.   Make a list of what's important to you.  Then order the items from most to least important.  Work on the top priorities.  You may need to let the others slip. Dorothy Day, a social activist, once said, "If you can't meet your standards, lower your standards."

 

Simplify your life.  Where do you really have to go?  What really needs to be done?  If you have less to achieve, you will be more successful at accomplishing it. 

 

Try to avoid the "am I doing the best for my child?" morass.  Obsessively searching for another treatment,  educational plan, surgery, doctor, diet, or exercise can sap your energy and prevent you from accepting your child as she is.

 

We had people who said, "If you go out to Washington State, you can find this doctor, and if you go out here, you can find this doctor." And we just had to say, "We've gone to a lot of doctors.  We've done what we could do. We have to accept."  Kelsey enjoys life so much, and she helps us to enjoy it. That sense of humor!  (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

While it's good to plan ahead, try not to project today's difficulties onto the future.  That only causes worry.   Things often change anyway.

 

Keep a diary.  Write down problems and how you met them.  As you look back, you will see that you were able to weather crises.  That will give you hope in future difficulties.

 

Don't isolate yourself.  Get out into the world with your child.

 

He was a child people remembered.  We took Joey to church and wherever we went, and people were very friendly . They would come over and want to see Joey.  We have 7 kids but the others never elicited this reaction.  People would say, "Oh, how is your baby doing?" He was unforgettable. (Erin, mom of Joey who was born with Trisomy 18)

 

You may have to face continual problems and adjustments.  You will learn to keep going.  Count the successes and focus on the joys.

 

We learned how to tube feed Gracie, and do everything for her. She would occasionally stop breathing and she had some seizure activity. We worked closely with Hospice to arrange bringing her home. I chickened out about 2 weeks into it - she had a severe seizure and they were about to pronounce her gone. I thought, "Hell, I can't do this in my living room with my kids - am I crazy?" But, 2 weeks later we got used to it. We brought her home on her 1 month birthday.  That was a great day! (Christine, mom of Grace Ann who was born with Trisomy 18)

 

MEET YOUR OWN NEEDS

 

Caring for your child can become all consuming. You need time to yourself.  List your needs and plan to meet them.  Who can help you?  How?   Here are some suggestions to help you maintain strength and perspective so that you can continue to be a good parent.

 

* Make a date with your spouse.

*Hire a baby sitter and take a long, leisurely bath.

*At least once daily, spend fifteen minutes doing something you like.  Find someone to watch your child during that time. 

*Attend a mother's group, weekly if possible.  You could take the child along.

 

My husband started sending me out on Saturdays when he was home to do whatever I wanted for awhile.  After the other two children were in school, Nathan was portable, so we went to book stores, craft stores, etc. together. He liked going out, and I think it was good for him socially. I know it was good for me!   Another way I got “me” time was late at night, after everyone was asleep. Often Nathan would still be wide awake at midnight or later. I couldn’t sleep until he was asleep, so I used those late night hours for me—I’m an artist, so I did a LOT of my artwork in the wee hours. He’d lie there and watch me and eventually drift off to sleep.(Jennifer, mom of Nathan who was born with Menke's Disease)

 

SUPPORT GROUPS AND AGENCIES

 

Other parents of children with difficulties can offer much support and insight.

 

I’d been looking on the Internet for a support group. I just wasn’t finding it. Suddenly I met someone who introduced me to an Internet group for parents of disabled children called Our-Kids. I’d never found anything that exactly matched our situation, and then suddenly there it was—a group of  parents of children, mostly severely disabled, all dealing with many of the same issues! That group now numbers around 800 families.  I still stay very actively involved. (Jennifer, mom of Nathan who was born with Menke's Disease)

 

Associate with local support groups for children with the same or similar condition as yours.  If you can't find such a group, start one.  The acceptance level in such groups is striking.

 

We went to a race for children with limb deficiencies.  It is the only place I've been to where there were thousands of people and nobody stared because everyone there was familiar with limb deficiencies.  (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)

 

Ciarra has changed me so much. I sure have slowed down to enjoy the world more. She is perpetually hopeful, and most often smiling. She is the closest thing to an angel as I will ever see. Through her, I have started an online support group. We are a close knit community. Several of our members are moms I tried to lend a little hope to when I found them shortly after their diagnosis. (Michelle, mom of Ciarra who was born with Down syndrome)

 

Use the internet, ask your physician, or contact state or local agencies about helpful groups.  Spend time, via internet or phone, researching agencies which might provide the services and information you need.  Often one contact will lead to another.  Here is the question to ask:

 

"My child has ______________ (name condition and describe). I am looking for agencies that may assist us in meeting his needs as well as parent support groups.  Can you make a referral?" 

 

If the agency says they don't know of any referrals, ask:

 

"Can you refer me to someone who may know?"

 

Keep an alphabetized list, either on file cards or in a computer file, of who you have called, if you left a phone message, when you called back, the result of the phone call, and so on.  Put unhelpful agencies into their own group.  If you have to call again, you will know which agencies were able to assist you and which were not.

 

We took advantage of First Steps - a program for special needs kids. Did physical, occupational, and speech therapy with Karlee. Later enrolled her in special needs preschool. She got her first wheel chair and this was the best thing we did for her. It allowed her to sit up (she had low muscle tone) and be at her peer's level. She blossomed! She was very verbal and very smart. She learned to count in Spanish! (Katie, mom of Karlee Rose, Benal, and Nikki, all of whom were born with spina bifida)

 

Generally families are able to care for their children.  However, neighbors, family members, friends, and

agencies can assist.  

 

Nathan and I spent 14 years living almost symbiotically. He was dependent for all of his needs, and I met those needs willingly and eagerly. My husband and I did all his care, only very occasionally getting a nurse for him. As our other two children grew older, they were involved with Nathan’s care as well. (Jennifer, mom of Nathan who was born with Menke's Disease)

 

Find out what governmental help is available and what laws can assist you.  If no legislation exists, work for some.

 

RESPECT YOUR CHILD

 

Your child is more like other children than unlike them.  Respect your child as a human being.  Avoid talking about your child's "problems" within hearing of your child. Your child ought not think of herself as a "problem."  If someone asks you about your child's condition in the presence of your child, think of a positive, stock answer.  Use your child's name, and address your language to your child.  People First language helps. 

 

Example: 

What's wrong with him?  

Answer:  Nothing is wrong with Wayne.  You're a great son, aren't you, Wayne? 

Oh, I mean why is he in a stroller?  He's so big . . .

Answer:  Oh, that!  Wayne thinks the stroller is great, don't you, Wayne?  If he didn't have spina bifida, he'd have to walk around this store like me and be bored silly.  Now he gets to ride like the wind.

 

When you discuss your child with others, focus on what she can do, not on what she can't do.  How you discuss your child has a great influence on how others think of her.  It also has an influence on how your child thinks of herself.  Do you want your child to think of herself as a burden to you or as a gift?  A child's deficits are best kept as private as possible, but his assets can be proclaimed to the world.  Assets are not necessarily things a doctor, guidance counselor, or psychologist would list. They are traits that make your child special to you.

 

As soon as your child can speak up for himself, teach him to do so.  He'll have to learn this sooner or later.

 

Example:

What's wrong with him?

Child:  Are you talking about me?  Nothing's wrong with me, is there, Mom?  I'm in this stroller because I have spina bifida and I can't walk very fast in the store.  Nothing wrong with that, is there?

 

Teach your child how to ask for, not demand, help.  Children need to know that parents are not mind readers nor are they slaves or robots.  Parents have intelligence and feelings, and both need to be respected.  When your child asks for help, respond lovingly and patiently. If the child can do the task for himself, politely tell him so.  If it's something you need to do, perform the task with joy.

 

My five year old Alexandra was born with a clubfoot. We found out when I was 20 weeks pregnant from my ultrasound. She had four surgeries to help correct her foot. Whenever anyone asks if she broke her foot, she matter of factly tells them, "No. I was born with a clubfoot."  She is not ashamed or embarrassed. She is in gymnastics and doing great.  I have never made a big deal or acted like she was any different than any other child. I think that has made a huge impact on how she handles the situation.  If I made a big deal, I believe she would, too. (Sabra, Alexandra's mom)

 

Build your child's self esteem.  Include him in all you do.  Let your child set limits on what she can do.  Allow your child to fail.  Challenge him to reach farther.  Enjoy the successes and learn from the failures.

 

EXPLAINING TO OTHERS

 

You'll want to explain your child's condition to family and friends.  Invite them over and teach them how to respond to your child.  Keep them updated on your child's progress.  One mother wrote a letter to friends, family, co-workers, and neighbors and gave the address of a foundation that researches cures and treatments for her child's condition. 

 

If you get a lot of unsolicited advice, let folks know that this is your child, not theirs, and that you are in control. You may often find yourself saying, "Thanks for the advice. I'll think about that."  A non-committal response can avoid a confrontation.

   

How do you handle questions from strangers and acquaintances?  You may not want to answer some of these questions.  Make a list of common questions and write down your responses.  Memorize the responses so they are on the tip of your tongue. 

 

One family designed a small business card that explained what they wanted strangers to know.  The card read:

 

YOU HAVE JUST ENCOUNTERED a person with an autism spectrum disorder.  He may be acting in an unusual way.  Please be understanding!  Autism is a developmental disorder that prevents individuals from behaving in a typical manner. http://www.autism-society.org[2]

 

Would you want to design a similar card for your child?

 

Sometimes you have to educate people on the spot.

 

People have a hard time understanding that she's a person.  They pretend we're not there because they don't know what to do. You see mothers telling their kids, "Don't look.  Don't stare."  And you wonder why. You think if they would just come over and say Hi.  If I  can get someone's attention I'll smile and say hello to people and they'll relax.  Little kids will be very interested in Kelsey's wheelchair or her walker and want to touch it and mothers will be, "Ahhh--don't touch!"  And I will say, "Kelsey doesn't mind. She likes to share." (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

YOU SAY YOU WANT TO HELP

 

Some folks will say, "What can I do? I'd like to help."  You may feel uneasy asking someone to do something specific.  How about creating a list of ways folks can help and handing it to them?

 

Ways You Can Help

 

Thank so much for offering to help us. It means so much.  Here are some ways you can help.  Would you like to pick one and let us know what day you can help?

 

Wash the baby's bottles.

Do the laundry.

Make a meal.

Baby sit the other children.

Drive our child to an appointment or practice.

Write thank you notes.

Vacuum.

Clean the bathroom.

Wash the kitchen floor.

Come and sit with our child while we go out for a few hours.

Repair the __________ (fill in the blank)

Do our grocery shopping.  We'll give you list and the money.

Do our Christmas shopping. We'll give you the list and the money.

Cut the grass.

Weed the garden.

Freeze (or can) the vegetables.

Take our kids to the park (zoo, fair, museum).

 

DOMINOES

 

One mother described dealing with her child's various medical crises as "watching a line of dominoes tumble, one after another."[3]  Crisis may follow on the heels of crisis, and diagnosis supplant diagnosis.  Eventually the dominoes stop falling, and life assumes a calmer pace.   This same mom reminded herself "that it's the journey that counts, not the destination.  Sometimes it's a bumpy ride; other times, it's very smooth.  But it's always interesting.  And, most importantly, it's a journey that John, David, and I are taking together."[4]

 

Being a new parent of a kid with special needs has to be one of the hardest things I've ever gone through. Alex has multiple disabilities and one medical problem would take the spotlight,  and we'd put out that fire and something new would crop up, and I'd have to learn a whole new ball game as well as  trust my own instinct and common sense. It really helps to know that there is a light at the end of what seems a very long tunnel. Not sure if things actually get better or we just get used to dealing with it or a combination of both. (Joanne, mom of Alex who was born with multiple disabilities)

 

EARLY INTERVENTION

 

Early intervention, which involves physical and mental stimulation geared to your child, can help your child meet her potential.  Ask your pediatrician or hospital for referral.  National organizations dealing with your child's needs may be able to advise you on techniques you can use at home.  Also contact a local politician regarding laws and government agencies that can help your child. Early intervention centers support parents through groups and meetings. Continue to phone agencies and individuals until you get the information you need.  The goal is to help YOUR child become what HE can become.

 

We belong to the Touch of Love group which has about thirty other kids besides Marissa who have congenital limb deficiencies.  We met lots of kids with hands like hers and we could see how other families dealt with that.  Inspirational speakers, who are adults with prostheses or congenital amputations, come and share with the group.  (Mary, mom of Marissa who was born with an absent left hand due to amniotic band syndrome)

 

Sometimes dealing with the system is more difficult and frustrating than dealing with your child.  What services do you really need?  If getting to or paying for parent support groups, intervention sessions, play groups, and exercise classes is causing stress and disruption, step back and evaluate if everything you are doing is really necessary.  Is what your child gaining worth the price?  Can you do something at home, on your own time, to achieve the same results?

 

ASSISTIVE TECHNOLOGY

 

In obtaining what will help your child, ask, "What is the goal?  How can the goal be reached?"  Think creatively.  By trying to make your child "fit" into society, you may be approaching life from the wrong angle.  Maybe society needs to "fit" your child.  Your child may reach goals differently than other kids do.   For example, you may want your child to be mobile.  Does this mean that your child has to learn to walk?  Maybe.  Maybe not.  Mobility might involve motorized wheelchairs more than strengthening weak muscles.

 

Imagine a technological device that would help.  What would this device do?  How might it look?  You don't have to know how to build it or where to get it.  Just think about who might be able to provide this device or something like it.  Where might you find these people?  Check with:  Government agencies which deal with folks with disabilities.  The internet. Agencies devoted to research and education on your child's condition.  Computer department heads at colleges and universities.  Companies that provide assistive technology.  Children's hospitals and medical centers.  Mechanics.  Carpenters.  Electricians. Computer techies.  Engineers.  Someone may be able to design and construct what your child needs.  If this can help your child, maybe it can help someone else, too. 

 

Figure skating has been my favorite. My father used an example provided by the War Amps to create a walker out of welded steel and hockey sticks, so that it could slide across the ice while providing me with support as I learned to skate. (Stacy, an adult who was born with amniotic band syndrome which resulted in the disfigurement of her left hand and an above knee amputation)

 

Presume that the child will become competent in using the technology.  The goal is to meet the child's needs.   

 

Marissa has both a passive and an electrical prosthesis.  She uses the passive one for ballet and the electrical one for theater and normal functioning which requires tying of shoes and picking things up, all of which she can do. (Mary, mom of Marissa who was born with an absent left hand due to amniotic band syndrome)

 

MEDICAL OPINIONS AND OTHER DIAGNOSES

 

If your child needs treatment or develops new symptoms, get a few medical opinions regarding treatment.  Be assertive and ask for pros and cons regarding every treatment option. 

 

Be sure that specialists have access to previous records and assessments including the most recent ones.  Let them know if symptoms or circumstances have changed since the last assessment.  This is particularly important for a new medical team which has no previous experience with your child.

 

A few years ago Kelsey had a bad reaction to anesthesia.  After her surgery, she was having a hard time breathing and I saw that.  She started to fight and hit which people do when they can't breathe. But so many people including doctors assume that when someone has as significant a disability as Kelsey, that when they start hitting, they are being aggressive.  And they want to stop it. I kept saying, "No, that's not it. She's having a hard time breathing. That's why she's acting like this."  They gave her medication to settle her down.  She was already having a hard time breathing and she stopped breathing.  She ended up on a respirator for three weeks. It made me see, one more time, that doctors need to listen to the parents.  The  doctor on call  was not one of her regular doctors and he did not know Kelsey.  One of her regular doctors said, "You should not have let them do anything until you had called me."  (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

If your child has a fatal condition, doctors may not be able to predict accurately how long your child will survive or what your child will be able to do.

 

A big part of his brain was missing.  But Joey did the impossible.  They told me that he could not see but he would follow me with his eyes.  He would touch your very soul with his glances.  At night before I would go to bed, I would go in to Joey and tell him, "Night Night."  He would go, "Ugh!" for me to hold him.  This was every night.  The nurse would put a duck on the corner of his blanket and he would reach out and knock that duck off.  He was an absolute miracle. (Erin, mom of Joey who was born with Trisomy 18)

 

Society, including the medical community, has schizophrenic attitudes toward disability.  Prepare yourself to advocate for your child.  You may feel like you are the only one who values her life.

 

The teaching hospital is equipped for special needs access. "We care about the person with special needs and so we have this special ramp, this ramp you can use to wheel your pregnant carcass up on your way to abort your 20-week-old Down syndrome baby per the good doctor's suggestion." (The prejudice against Down syndrome children) didn't end with doctors. We talked to others who said that when their children were born, instead of sending flowers, people sent apologies. One person told me some particularly cruel comments another mother made at a playground. Another said her doctor was disgusted that she wouldn't abort her child. Yeah, our culture really "cares" about those with special needs. Is it any wonder moms get the impression that Down syndrome (or anything else) is hopeless and cave under the pressure and fear? (Ashli, mom of Emmil who was born without Down syndrome)

 

You may be offered non-treatment for a possibly correctable problem.

 

Karen's heart defect was not quite as bad as originally thought and could be corrected with one open-heart surgery.  I was shocked when the cardiologist told me he would support me 100% if I decided not to agree to the surgery and allow her to die. This was especially hard to hear because, as a nurse, I knew that the doctor would have been otherwise enthusiastic about an operation offering a 90% chance of success - if my child didn't also have Down syndrome. (Nancy, mom of Karen who was born with Down syndrome)

 

You may have to fight for your child's treatment.

 

The neurosurgeon decided the shunt was not working and that she needed a different one. Just days before
Thanksgiving, they did the surgery.  We were in the hospital for 3 very long months.  We literally had to fight for Karlee's life 24/7. We never left the hospital. Finally, in February, we returned home. (Katie, mom of Karlee Rose, Benal, and Nikki, all of whom were born with spina bifida)

 

No one can predict with complete accuracy what your child can achieve.  Strive to have your child reach his potential by giving your child every opportunity at a normal and full life. 

 

I learned to walk with a prosthesis at the age of fifteen months, and I have been walking, running and playing sports ever since. I have participated in  track and field and figure skating.. I’ve played volleyball with our school team, I’ve taken swimming lessons for over five years completing eight levels and I played softball in high school girls' league. (Stacy, an adult who was born with disfigurement of her left hand and an above knee amputation due to amniotic band syndrome)

". . . the doctors had told her that Charity would be unable to enjoy any of her senses.  She wouldn't be able to see, hear, feel, taste, or smell.  She would know nothing of what was going on around her, would never have any control over any part of her body, would never experience or be able to express joy, happiness, and love. . . .What was most amazing to me, though, was her personality.  She loved to be held and cuddled, she fussed if she didn't get her bottle on time, she enjoyed taking baths, and more and more her radiant smile was becoming a sought-after reward by all of us.  . . .Not only could she hear, she could obviously hear well!  No matter how quiet we tried to be, she could always tell when one of us was near. And she visibly reacted to external sounds.  For instance, she loved music (the real kind, rather than my singing), but only certain types."  (Blaine, adoptive father of Charity whose CT brain scan revealed "essentially no visible temporal, parietal, or frontal brain" in the book One Tattered Angel)

 

Sometimes parents have low expectations of what their child can achieve.  Fight these thoughts and let your child try.  Expect your child to do as much for himself as possible.

 

When she got to be about two years old, I was thinking about how most two year olds walk around in their parents' shoes and how Jessica would never do that because of her limb deficiencies. The next thing I know she puts the shoes on her arms and comes clomping into the kitchen in them. (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)

 

DEALING WITH PROFESSIONALS

 

YOU are the expert on YOUR child.  Doctors study symptoms and diseases. YOU study YOUR child.  YOU know when something does not seem right.  If a doctor minimizes symptoms which alarm you, get a second opinion.  And maybe a third.  If suggested treatment seems wrong to you, make the specialist justify it. 

 

When Kelsey was 3 years old, she was really, really sick.  We made a decision that we wanted to bring her home, to be held and be with the family. We felt she spent way too much time in the hospital. So we got an oxygen tent and we got suctioning and nurses and we brought everything home with us.  Some doctors told us that we were in denial and we didn't understand what we were doing and this wasn't the best for Kelsey, but we just felt that she needed love and she needed to be out of the hospital. She got better. When she was a baby, I saw this spark in her eyes that she was a fighter and I felt like she was starting to lose it.  She got that spark back in her eyes again.  Not that she hasn't been back in the hospital and not that she hasn't gone through difficult times because she has, but she hasn't lost that spark again.  (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

Depending on the advice given, ask yourself if you believe that:

 

·         My child will outgrow the concern?

·         I might be hostile, over protective, or causing the problem?

·         This problem really ought to be left untreated?

·         The treatment suggested makes sense?

·         Continuing treatment that is not working is going to magically work now?

·         My child ought to be denied the treatment protocol because he's not "normal" so "what good will it do?"

·         My child will never _____________ (fill in the blank.)?

 

I have a 10 year old son who was born at 26 weeks. He had a very difficult NICU stay with the worst complication being lung hemorrhage and cardiac arrest that lasted ~ 30 minutes when he was 20 days old.   The NICU doctors advised us not to continue with any heroic measures since it could only result in severe multiple disabilities. It would be the best and kindest thing to let him die.  His life would be non productive and full of pain.  Alex will never be " norma,l" but he surely has had a fulfilling life and has made an impact on just about everyone he meets.  The brain is a strange and wondrous organ, and X rays and scans can't predict outcomes. Alex had a CT scan.  He  has "catastrophic" loss of white matte;  the gray matter in encroaching where the white matter should have been. At 10, he talks (non stop it seems at times) clearly and understandably and has a very extensive vocabulary. He is in a regular 3rd grade classroom with needed supports. He is below grade level in many areas, but his personality makes him just one of the kids.  He plays ball with the Miracle League of Michigan.  When Alex was about 5 or 6 and just becoming aware that he was the only one in the school with a wheelchair and thick glasses, I was getting him ready to catch the lift bus to school and he looked me in the eye and asked why he couldn't walk like everyone else. So, as I buckled the straps on his wheelchair, I told him he was born too early and too small (smaller than a 2 pound can of tomatoes) and that his heart had stopped and it caused a big boo boo in his brain. That the doctors told us the boo boo would make it so he couldn't walk and that he couldn't eat, think or talk (they said I wouldn't be able to talk Mom?????). He thought a minute, looked at me and said, "Know what mom? I sure fooled all those doctors." (Joanne, mom of Alex who was born with multiple disabilities)

 

Select a professional who:

 

·         Takes time with your child.

·         Knows how to speak to and handle your child to minimize anxiety.

·         Answers questions in understandable terms.

·         Listens to you.

·         Respects your judgment.

·         Welcomes your opinion and suggestions.

·         Treats you as part of the team.

·         Is humble enough to say, "I don't know, but I'll try to find out."

·         Will suggest a specialist or second opinion.

·         Has a positive outlook and will help your child reach her potential.

·         Clearly outlines goals and time frames.

 

To insure that some of these qualities are met in any professional, ask the following:

 

·         Would you please explain that again? 

·         May I share my experience with my child in this regard?

·         What is the low and high spectrum of what children like mine can achieve?

·         What goals do you see for my child?  What is your projected time frame in meeting them?

·         What is your plan if goals are not met on time?

 

Evaluate decisions as they are made and results are seen (or not seen).  If a decision does not give the expected result, re-evaluate and decide anew.  Fight the tendency to look back and regret a choice.  You made the best choice you could with the information you had.  You may have new or more information now, but you didn't have it then.  Regretting past choices is a bottomless pit.  Don't fall into it.

 

To prepare for visits with professionals:

 

1. Read up on your child's condition and on what kids with it can and cannot do.  Be prepared to present this to the experts.

 

2. Make a list of your questions and concerns.

 

3. If you have a particular concern, keep a log of your child's behavior and bring it with you to document your sharing.

 

4. Get to the topic at hand and stick to it.

 

5. If you don't like what you are hearing, politely but firmly speak up.

 

6. Ask questions if you don't understand something.

 

7. Say no to things that don't feel right to you.

 

8. Form a partnership with the professionals.

 

9. Tape record the conference and later review it.

 

10. Take notes.

 

Keep dated records of all medications, treatments, options, therapies, phone numbers, ID numbers, phone and office consultations, and evaluation and assessment reports.  File all these in chronological order.  You will be able to quickly and can easily compare current and previous information.

 

If you feel that a professional is not acting properly, find one who will treat your child better.

 

Early intervention taught me to advocate and gave me the confidence I needed to stand up to the docs. I asked questions and got answers.  Just because Alex had brain damage wasn't reason they couldn't do something to help.  My biggest obstacle was being "nice and polite"  The first time I fired a specialist, it was the respiratory doc. He ordered another pH probe after the fundo/gtube had been placed. Alex began to get ill and developed a fever and his breathing was beginning to sound a bit weird, just the beginning of something and mom's instinct. The doc blew off my concerns, said Alex was fine and did another pat on the head thingie. I had started to butt heads with this doc about 2-3 months earlier when I refused to give Alex a medicine he prescribed. Alex developed a rash and his pediatrician determined it was an allergic reaction to the med. The respiratory said no one was allergic to the med and to continue giving it to Alex, and I refused.  Just the same, when I fired him I was actually worried about hurting his feelings, and my knees were shaking.  It wasn't something that was easy to do but, believe me, it was liberating.  The couple of times I ran into a doc that didn't believe in Alex as a viable human being. it got so much easier.  I learned to take steps to bring the doctor's behavior and attitude to the attention of those in authority, the head of the department, insurance companies, patient relations.   Now I don't even quiver a little. (Joanne, mom of Alex who has multiple disabilities)

 

SUMMARY OF HOW TO LIVE

 

Kathie Snow, in her book Disability Is Natural, summarizes the following points for success:

 

                1. Don't worry.

                2. Focus on your child, not the disability.

                3. Have your child in as natural an environment as possible.

                4. Presume that your child is competent.

                5. Have high expectations.

                6. Meet your child's unique needs.

                7. Provide tools for success.

                8. Help your child naturally.

                9. Experience the dignity of risk.

                10. Anticipate criticism

                11. Protect your child's privacy.

                12. Listen to your inner voice[5]

 

The  Ten Commandments for Parents of Handicapped Children

 

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

 

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts when ever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

 

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.[6]

 

 

[1] Simons, Robin. After the Tears:  Parents talk about raising a child with a diffability.  Denver, Colorado:  Children's Museum of Denver, 1985, p. 13.

 

[2] A Special Kind of Love: For Those Who Love Children with Special Needs, by Susan Titus Osborn and Janet Lynn Mitchell (Nashville, Tennessee:  Broadman and Holman Publishers, 2004), p. 43.

 

[3] Jillian K. Welch, "The Journey." You Will Dream New Dreams by Stanley Klein and Kim Schive, Eds.  New York, New York:  Kensington Publishing Corporation, 2001, p. 198

 

[4] Ibid.

 

[5] Kathie Snow.  Disability Is Natural.  Woodland Park, Colorado:  BraveHeart Press, 2001, pp. 436-440.

 

[6] Reprinted with permission from Spina Bifida Family Support and reprinted from a posting to the Children’s Special Health Care Needs Mailing List, [CSHN-L]sponsored by the University of Florida’s Institute for Child Study.  Anonymous Author

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