INTO THE FUTURE WITH A CHILD WHO SURVIVES

 

We cannot do everything and realizing that gives us a sense of liberation.  This enables us to do something and to do it very well.  -- Oscar Romero

 

What You've Taught Me

 

Ah, Kay-Marie, what have you taught me?

That our expectations are not always met,

That our fantasies are indeed fantastic,

For reality is far richer than anything we can imagine.

You have taught me

That artificial limbs are much less trouble

Than PMS in a teenager,

That a mind that struggles with math

Might soar when it comes to oils, acrylics, and pottery,

That it is better to never be able to ballet

Than it is to never be able to live.

You've taught me that the worst I thought of you

Never materialized

And the best I thought

You far surpassed.

Back when we adopted you

I could not know the future.

But if I had known it,

I'd take it all again--

The trials and the triumphs--

Because they mean you are in our lives.

 

--Madeline, Mom of Kay-Marie who was born with two lower limb deficiencies and other difficulties

 

BEING A NORMAL FAMILY

 

How you deal with your child, and how you allow society to deal with him, will determine whether or not you are a "normal" family.  Carry on with whatever activities are normal for your family, making the necessary adjustments to include your child.

 

As the weeks went on, her seizures and apnea increased. We got used to it. We took her to Grandma's, the mall, the park and we took several walks around the block. We tried to make it as normal as we could.  Hospice was a tremendous support. The nurse was on call 24/7. She would come as often as I wanted. In addition, we had a nun, a dietician and a social worker supporting us throughout our time with Grace.  We wanted things to be as normal as possible.  (Christine, mom of Grace Ann who was born with Trisomy 18)

 

All children require time, input, and concern, not just one with difficulties.

 

It is a little crazy with all the doctors' appointments.  Sometimes, I feel frustrated because I don't know what is wrong.   Emily has taught me to appreciate the little things in life, not to take anything for granted especially love and health. I love the cuddles, the smiles and giggles, and just giving her a bath. Story time is so special with the 3 youngest. Even though my 16 year old is driving me crazy, I look at her and realize one day she is going to be out on her own, living her own life, and I pray I have taught her right from wrong, how to protect herself, manage money, and how to love unconditionally. It takes a lot out of you emotionally when you have children, not just ones with special needs. (Sabra, mom of Emily who was born with enlarged ventricles in her brain)

 

"But," you object, "normal children don't need this level of attention." 

 

Not so.  All infants and toddlers need a great deal of attention. 

 

"But those children will grow out of needing that much care.  My child never will."

 

That may be true, but why should that fact keep your family from being "normal?"

 

Kelsey has been part of all our family vacations.  She uses a sit ski to ski with us.  She loves roller coasters, speed boats, anything fast.  One of our nurses put in for us for a Wish Come True (Kelsey had been very sick) so we went to Disney World.  Kelsey goes into the water in her beach chair. We have a family Easter egg hunt every year. Kelsey is in Girl Scouts.  She's been on a whale watch, went to New York on the train, and went to Discovery Cove and swam with dolphins. In school, with support, she walked across the stage for her eighth grade graduation. She brought attendance down every morning to the school office. She's been in Special Olympics and got some awards.   She can bowl.  We can push her chair right next to the ramp--we put the ball there and Kelsey pushes the ball down.  She's out on the court playing basketball with her friends.  Eight kids came over and we had a birthday part.  Just meeting Kelsey for the first time you don't realize how much she enjoys life. (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

We decided that we needed to keep our lives as normal as possible. We needed to have fun, “make memories,” and try to be a normal family. So we took Nathan everywhere we went unless he was not well.  All our friends loved him and felt very comfortable with him. He was recognized and known to the people at stores we frequented.  The more normally we treated him, we figured, the more normally people would see him.  We traveled, camped (in my folks' motor home, so we had electricity for Nathan's feeding pump), went out to dinner, to church, concerts, movies and school activities, etc.  We had a very good life together. (Jennifer, mom of Nathan who was born with Menke's Disease)

 

What are "normal" families like? Normal families:

 

·         Do things together.

·         Love one another.

·         Help one another.

·         Disagree sometimes but love each other anyway.

·         Endure sibling rivalry.

·         Support each other.

 

Our pediatrician team told us about occupational therapy, and friends referred us to a prosthetic company.  Marissa has had six prostheses for her absent left hand. She's a ballerina and plays violin.  She is super smart, a talented singer, and does not let her disability hold her down.   In fact, she does not view her absent left hand as a disability as she's had it all her life.  Right now Marissa is very involved in musical theater.  (Mary, mom of Marissa who was born with an absent left hand due to amniotic band syndrome)

 

Being a normal family requires some risks. Every child takes risks.  Think of toddlers learning to climb stairs or older kids climbing trees or learning to ride horses.  The potential for injury may be present, but does that mean your child should not try?

 

Kelsey has a few seizures a week. We have to be careful because we like her to be as independent as possible.  We like her to use her walker and to sit in chairs other than her wheelchair, but we have to be really careful and watch for signs of a seizure.  Once she was sitting at the kitchen table--she doesn't use her wheelchair at the table--but I just turned her away from the table and she had a seizure, fell forward, and broke her two front teeth.   They got bonded. They didn't fall all the way out. (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

As you learn day by day, you will find that you are dealing with your child's difficulties.  Life assumes a manageable routine, and joy returns.

 

Vikki grew beautifully. With physical therapy and all the other therapies, she crawled at 13 mos. and walked at 19 mos. To think that they gave her a 30% chance of ever walking!  My son Michael is now 16 and he is hanging in there at school (11th grade). He continues to struggle with his ADD stuff and just being a teen. He has had no problems with his left foot/leg, other than dealing with its limitations and lack of muscle in the calf. He's ALWAYS a challenge! But I love him so!  Victoria will soon be 12.  She is beautiful! We haven't had any major surgeries or hospitalizations since she was a year old.  She hasn't been on meds for about 2 years and has stayed relatively healthy. She did develop an increased scoliosis (26 degrees).  She will be wearing a body jacket for at least 18 months. She wears arch inserts in her shoes and a night brace on her left big toe that has developed crooked. She is simply amazing and really a happy kid! We are EXTREMELY close and love to sing in the church choir together. She is also on the honor roll & citizenship at school. She is my hero!!  (Susan, mom of Victoria Ann who was born with spina bifida and of Michael who was born with a club leg)

 

MARRIAGE

 

Parenting a child with difficulties necessitates new decisions, adjustments, and attitudes.  Marriages break up when a spouse cannot adjust, gives undue attention to the needy child, or refuses to help in child care.  Many of these marriages would have dissolved over another issue at a later time, because every marriage is, at some time, subject to unexpected stresses and plan changes. 

 

Avoid the pitfalls by

 

·         Communicating with one another.

·         Refusing to pin blame.

·         Integrating your child into your life instead of having your life revolve around your child.

·         Trying to understand your spouse's emotions.

·         Helping out. 

·         Discussing treatments and therapies together.

·         Jointly attending sessions with professionals.

·         Sharing child care.

·         Compromising.

·         Creating an emergency procedure--who does what.

·         Selecting which parent will have the final say if agreement can't be reached.

 

FINANCIAL CONCERNS

 

Finances might be a concern.

 

Finances were the biggest difficulty we had. We had insurance, but it didn’t cover everything, and there were big deductibles each year. We qualified for skilled nursing care, but the expense was so great that we seldom used it unless absolutely necessary.  We eventually took out a mortgage to pay medical bills. We felt like we were always living on the edge financially. We’d made a decision that I would stay home with our children, and, when Nathan was diagnosed, it became  a necessity.  Our one income  was stretched way too tightly.  Our medical expenses were so high that they ate up anything we might otherwise have saved. And because we had a middle-class income, we fell through the cracks when it came to getting any assistance. (Jennifer, mom of Nathan who was born with Menke's Disease)

 

Insurance may pay for your child's medical bills.  If not, ask your insurance company for referral to charitable, church, and governmental agencies that can help.  Support groups can also provide guidance.  Keep searching until you discover all the help for which your child may qualify. 

 

If you are refused assistance, be sure that the refusal is lawful.  Parents have been told that they were ineligible for medical insurance when such was not the case.  Double check with other agencies and officials.

 

Friends and family, veterans, church, and civic groups, may begin a non profit fund for your child's medical needs. Many people and organizations are willing to assist.  Fund raisers are limited only by the imagination.  Be sure to write a thank you note to every group that helps.

 

If you need more financial help, turn to your local politician.  In the United States, this would be your state or national representative.  Involve your senators, too.  Also call local TV and radio stations and local newspapers about your dilemma.  The more publicity, the better the chance of obtaining funds.  

 

Your tax office can help you determine if items you purchase are tax deductible.  .

 

Some employers can make adjustments for parents of children who need special care.

 

My boss said, "Why not work at home for the rest of your pregnancy?" and, after Mikey was born, he said,  "Why not continue working at home?"  I work from home and have a nanny to take care of Mikey.  I can hear him constantly. When I want to take a break from work, I go and play with Mikey for a few minutes. (Jennifer, mom of Mikey who was born with cloacal exstrophy)

 

Sometimes a change of attitude makes a big difference.

 

One day I was talking with a friend at church. He and his wife had multiple miscarriages and then finally gave birth to three children, each more premature than the one before.  All lived but had very rocky beginnings.  I asked him how they dealt with the stress of all the medical bills.  He said, “Well, some people have car payments and house payments.  We have kid payments.”  A load slid from my shoulders at that moment.  I would do or pay ANYTHING to help Nathan to live and to have a good life.  Suddenly I had a new perspective.  I won’t say the financial stress wasn’t still there, but now we could look at the bills as something we were doing for our child, and not as a purely negative thing. (Jennifer, mom of Nathan who was born with Menke's disease)

 

TEASING             

 

As your child matures, other children may tease or ridicule him for being different.

 

I am born with deformed fingers.  Everything was great till I started school.   Then the teasing started.  Almost everyday they teased me cause of my fingers.  I was scared to walk home from school alone and had almost no friends in school.   Teachers just said, "Don't care about them.  Then they will stop." They didn't stop.  One day my mom was outside hanging up clothes and I came home from school.  I walked just past her and asked out of the blue, "What is the reason for me to live?"  I didn't try to kill myself but I had that thought lots of times. (Elin, a young woman with digit loss due to amniotic band syndrome as well as neurofibramatosis)

 

Everyone in my town and school knows who I am and the reason behind my disability. Everyone understands, and they have learned to look past it to see the real me. When I was seven years old, my family moved.  This was a shocking experience. No one knew who I was, and they didn't understand me. It was hard to make new friends, and I was constantly stared at. After a few months, we moved back home to the people who understood me. (Stacy, an adult who was born with disfigurement of her left hand and an above the knee amputation due to amniotic band syndrome)

 

You, as parent, may be more aware of staring or negative responses than your child is.

 

Just the other day in the store, a man, his wife, and their six children were staring at Jessica, and they were not ten feet away from us.  They were speaking Spanish which I do not speak so I felt they would not understand anything I said to them.  I wanted to say something mean.  Then we left the store, and one of my older daughters asked Jessica if she had noticed the staring.  She said no.  She had been looking at other things. (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both  legs)

 

While you cannot fight your child's battles, you can educate his school peers by talking to them about birth defects and helping them to understand your child.  This takes the mystery out of the disability and may make your unique child one of the most popular.

 

There were kids whose parents requested that their kids be in Kelsey's class because those kids would learn to be more compassionate and caring.  (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

When your child is able, teach him to speak up for himself.  

 

I told Jessica, "When people stare, just wave or say HI!"  (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)

 

When I was 19 was the last time anyone teased me. That boy was about 2 years younger than me. 
He asked me where I was hiding my fingers.  I asked him where he had hidden his brain. (Elin, a young woman with digit loss due to amniotic band syndrome as well as neurofibramatosis)


Children often view themselves differently than they will when they are older.

 

I was at the store to buy some candy when I was 12 years old.  A lady asked me: "Did you lose your fingers in a meat cutter?"  I said, "NO, I was born like this."  That lady should have known better than asking that to a 12 year old kid.  Now sometimes, when I am on the bus or the subway, people ask me: "Can I ask you a personal question?"  I say, "Yes. Sure."  I know what they will ask.  And then they ask me what happened. I tell them and they say, "Oh, OK!"  I think it is ok that they ask rather than think I lost my fingers.   We have students in our daycare who at times ask me what happened, and I say I was born like this.  Sometimes no one notices it before I tell them." (Elin, a young woman with digit loss due to amniotic band syndrome as well as neurofibramatosis)

 

I have found ways to deal with people staring.  I simply smile.  If a young child has questions about my appearance, I feel honored to answer and give them a better understanding. (Stacy, an adult who was born with amniotic band syndrome which caused disfigurement of her left hand and an above the knee amputation)

 

Foster pride and self worth in your child, and you may be surprised to see how your grown child views what you once considered a tragedy.

 

I am a member of The War Amps Champ Program. I regularly attend their seminars to learn about new technology for amputees. They have helped me understand who I am and that I should be proud of what I have accomplished. (Stacy, an adult who was born with amniotic band syndrome which caused disfigurement of her left hand and an above the knee amputation)

 

My fingers were completely webbed at birth, and both hands were joined. The plastic surgeon has done an amazing job.  I did have a few problems at school, mainly other kids picking on me because none of us had ever seen anything like it! My mum told me I was special, but it does little to ease the pain when you're six and struggling to fit in. But now I don't even really think about it. It's only when I notice someone looking at me sideways, that I remember "Oh yeah,I'm special". As soon as I got over trying to hide it, life became a lot easier.  My one regret is that living in a jandal (thong, flip-flop) nation I don't have the toes to hold them on!!  (Kirsty who was born with deformities of the hands and feet due to amniotic band syndrome)


MAKE A WAY

 

If you want your child to be included in a certain class or program and are meeting resistance from those in charge, talk to the officials. Educating them about your child's abilities and needs may be enough to grant your child access to the group. 

 

Our church St. Lucy's has learned from Kelsey. They were nervous when I went to sign up Kelsey for CCD.  They first said, "Do you mean we'll get a special class for Kelsey?"  I said, "No, that's not what I was thinking. I was thinking that Kelsey would be with the kids her age just like anyone else would. Obviously I'd go with her or teach the class."  It took some work for St. Lucy's to help Kelsey figure it out. (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

The group may be concerned about your child's medical needs.  They may feel that they are not equipped to handle an emergency.  Have a plan worked out for emergencies before you talk to any group.  This way you will answer an objection before it is raised. 

 

If you want an experience for your child that's not available in your community, maybe you ought to begin something new. 

 

I started a summer camp for Kelsey.  We have a lot of fun.   The camp is 6 weeks.   It is exhausting, but I love it.  We have about 30 staff and have 65 kids that attend.  It's not just for kids with disabilities.  Parents hear about it and want their kids to be included.  I have the support of family and Looking Upwards--when I went to them and told them about the summer camp, they were supportive.  (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

UNDERSTANDING DEVELOPMENTAL STAGES

 

All children progress through the same developmental stages.  Mental retardation can slow down the stages or may cause development to end at one stage.  An occasional child skips a stage.  Recognizing the stages will help you understand what behaviors are appropriate for that stage.  Books, articles, web sites on child development, and other parents can provide in depth insights.  .

 

Very briefly, some of these stages are:

                1. Child is focused totally on self and his own needs.

                2. Child learns what behaviors work to get needs met and uses those behaviors.

                3. Child begins to see things from another's viewpoint but still sees self as most important.

                4. Child begins to make judgements about what is normal and usual based on his own experience.  Things that are not normal or usual in this child's experience seem "bad" or "wrong." 

                5. Child develops limited empathy for others.  He begins to understand that experiences other than his may be "normal" to others.

                6. Child begins to notice differences in herself and does not like them.  Child wants to fit in.

                7. Child begins to see parents as repressive, controlling, outdated, unsympathetic, and stupid and turns to peers for understanding and support.

8.  Child begins to realize that parents are not as dumb as she thought and that peers are not as smart as she imagined.  Relationship with parents becomes more of a mentor/friend relationship than an antagonistic one.

 

Generally stages 1-4 are those of infants and young childhood.  Stages 5-6 develop in pre-adolescence, stage 7 occurs during adolescence and teen years, and stage 8 in young adulthood.

 

WHOSE DREAMS?

 

"My mother listened to me and then quietly said, 'I know that thinking about all of those things is very painful right now, but you have to remember that those are your dreams, sweetheart, not hers. Jesse will have dreams of her own.  They may not be like those of other children, but they will be her dreams just the same.'"[1]

 

Talk with your child about his dreams.  Brainstorm together ways to make them come true.  Persevere in making them happen.

 

My son Jonny, now 12, is a snappy dresser and an avid movie/Broadway buff, with a repertoire including songs from Phantom of the Opera, Annie, Bye, Bye Birdie and more. He loves people of all ages, but babies make him turn to mush. He has an uncanny way with animals. He loves school, but that doesn't keep him from loving the thrill of snow days more. (Barbara, mom of Jonathan, Jesse, Daniel, and Justin, all of whom were born with Down syndrome)

 

Your child will realize her dreams if you help.  Build your child's self esteem and self confidence.  Only by helping your child be as independent as possible, as early as possible, will you prepare him for adulthood.

 

It's all how you treat it.   She does not hide her hand from kids who walk up and ask what happened.  When kids say, "Where's your hand?" and ask her what happened, she says, "That's the way God made me."   Now she is almost three.  She puts her socks on, her shoes, pants, and shirt, combs hair, holds crayons, and paper.  She does not like us to touch her hand or give it too much attention, but when it's time for her to roughhouse and play with you she will reach out and will wave with her little hand.  (Annalee, mom of Brooke who was born with nodules for fingers and a boneless thumb on her left hand)

 

Here are some suggestions to help your child realize her dreams.

 

                * Praise your child for jobs well done and efforts sincerely made, even if they are not totally successful.  Don't praise for efforts you know are sloppy.

                * Create situations that will build your child's self confidence and self worth.  Capitalize on your child's talents.

                * Even though you could do something more quickly, allow your child to do it so he learns his capabilities.  Sometimes this means watching your child struggle while you hold back even though you want to help. 

                * Avoid the pity pot.  Pitying your child won't help her.  Respect your child and use her strengths to build her up.  Don't baby your youngster or allow her to manipulate you or get away with behavior you'd not tolerate in other children.   

                * Ask your child's input on decisions which involve him.  Implement his ideas as much as is practically possible.

                * Overestimate rather than underestimate what your child can do.  If you raise the bar, your child may reach it.  Try and see without frustrating your child.

                * Teach your child personal care skills.  This may mean allowing some things to be done less perfectly than you can do them. It also may mean some adjustments such as short hair cuts or using slip on shirts and velcro zippers.

                * Give your child chores.   Only expect as much perfection as your child can give. 

                * Within reason, adapt the house to the child, but remember that other family members live there also and that your child will have to live in a society that is not 100% suited to his needs.

                * Integrate your child into society.  Help her to deal with questions and responses.  Teach her how to interact politely with adults.  Let her make purchases, order from menus, and negotiate streets as much as possible.   Teach your child as many social survival skills as she can learn.  These are skills adults need.

                * Have your child make friends.  You may have to bring your child to other kids or bring them to your child.  Teach your child the skills needed to be a good friend.

                * Help you child to understand and accept his differences as the source of abilities and insights other kids don't have.  Help your child share her talents with others.

                * Encourage hobbies and special interests so that your child uses leisure time wisely.  These could become hallmarks of recognition and sometimes of income.

                * Incorporate some structure into your life.  Schedules work well, even if you can't always meet them, because they keep you focused and help your child anticipate what is coming next.

                * Think radical new thoughts.  Society has set certain educational goals for every child. Maybe your child can meet them.  Maybe not.  Brainstorm ways to develop skills your child has.  If society expected everyone to be auto mechanics, lots of us would be failures.

                * Allow your child to make choices and then take responsibility for them.  If the choice was good, the child will obtain the rewards.  If poor, the child will suffer consequences which he needs to deal with himself.  We mature by making decisions and then living with their results.  Being self determined is more important than any functional ability.

                * Foster a sense of humor and perspective in your child.

                * Do not allow others, including grandparents and other relatives, to pity, coddle, excuse, or belittle your child.  Expect them to treat your child as you do.  Don't accept any other behavior.

                * Support your child's dreams.  Instead of thinking and saying that your child could never achieve her fantasy, say and think, "If you really want to do that, we'll look for a way to make it happen."  Most outlandish dreams fade with time, but the do-able ones persist.  Your child will understand better than you do what is do-able for her.

 

I see him working towards his dreams of becoming a veterinarian.  He speaks of college, of a family of his own, of being on his own one day and not having his mom tell him to clean his room. Nick is a pretty average young man, with an above average spirit. (Ashley, mom of Nick who was born with spina bifida)

 

Aim for full inclusion of your child into society.  National disability organizations can refer you to laws which will help your child be part of the mainstream.

 

SCHOOLS

 

School can present problems.  Teachers may not know how to deal with your child's needs.  You may have to educate the teachers and other school personnel about how to treat your child.

 

Kelsey went to a school for children with disabilities until she was ready for kindergarten. Then she went to public school.  She definitely paved the way for kids with very significant disabilities.  When she first started school, she had to use oxygen and suction which made people nervous, but once they got over their fear, they were fine. Then there were field trips. I always say, "Kelsey should be treated just like any other child.  If the kids in her class go on field trips, then Kelsey should go on field trips."  They realized that Kelsey could be part of the class just like the other kids, and how much the other kids actually learned from her (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

School personnel may assume that physical differences indicate mental lacks.  They will have to learn to think otherwise.

 

Before Jessica started school, she was scheduled for an IQ test. I asked, "Do they test every child before they start school?"  "No," I was told, "only the ones whom they think will have learning disabilities."  They tested Jessica, and she tested out much smarter than average. (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)

 

Children with special needs ought to be given an IEP (Individual Education Plan). This ought to address the needs in specific terms with specific time frames.  It should also tell who will provide what services to meet the needs. Parents are to help write the IEP and must approve it before it is implemented. You ought to also be invited to staff meetings.  Take along an objective friend or relative so that you are not unnerved by the array of professionals.   Listen. Be polite. Be assertive but not aggressive.  Admit that the professionals have knowledge that you don't have. Try to understand where they are coming from. But do no allow them to intimidate you.  You are a professional, too!  Nobody knows your child better than you do. 

 

Having a child with Down syndrome has helped me see there's infinitely more to life than intelligence, beauty and "perfection." It's also taught me that not everything can be measured in dollars and cents - the benefits of full-inclusion extend beyond a child with Down syndrome to his classmates, teachers, family and friends. (Barbara, mom of Jonathan, Jesse, Daniel, and Justin, all of whom were born with Down syndrome)

 

Consider yourself your child's case manager.  The case manager has the greatest say in how the school system treats a child.  Advocate for what your child needs.  See that the learning environment is maximized for your child.  If you don't understand something, ask.  If you don't like something, say so.   If your child needs more services, request them.  If you question test results, ask for a re-test or schedule an independent evaluation.  Be completely comfortable with the IEP before you sign your approval. Then follow up on the IEP and be sure that what is written is actually being done. If it isn't, schedule a meeting with the school and discuss what changes need to happen.  If you still don't get satisfaction, take legal action.  A lawyer can advise you.

 

When Kay-Marie entered high school, I home schooled her in academic subjects while she took specials at the high school.  I would meet with her high school team to go over her IEP (Individual Education Plan) and share with them what we were doing at home.  The school saw me as part of Kay's educational team.  I submitted to them a list of texts we used (some of them given us by the high school at our request), goals, and evaluation means at the beginning of the school year. At the end of the year, I gave the school samples of her work at home as well as her major exams and book reports. (Madeline, mom of Kay-Marie who was born with two lower limb deficiencies and other special needs)

 

Schools tend to look at what a child can't do rather than what he can do.  Talk to the school system to be sure they are giving your child the best.

 

At home or school or church, Jonny  is the first to offer help, to comfort someone who's down, and to laugh uproariously at the punch lines. His preschool teacher named him Ambassador of Goodwill. His public school kindergarten teacher, after 30 plus years of teaching, said she'd never seen children as loving and caring as Jonny's classmates. The secret, she said, was Jonny. In fact, I bet some people would rather spend a day with Jonathan than with the experts who comment on his right to exist. (Barbara, mom of Jonathan, Jesse, Daniel, and Justin, all of whom were born with Down syndrome)

 

If you notice a problem, go to the school with a solution.  If you don't have a solution, define the problem in this way:  What would it take to _________( the goal  you want for your child)?  Brainstorm solutions with school personnel. 

 

Consider the school system a partner.   Negotiate if necessary.  If one school system is not cooperative, you may be able to enroll your child in another.  Once a school begins to work with your child, they may find that gratitude has replaced their fears. 

 

If Ben had not lived, his friends would not know him, the school’s culture would be different and something less than it is now. Our community would be less bright and less humane. His sister’s view of the world  might have been more narrow. I would not know the people I know today. Ben enjoys his life, loves his family and appreciates every day. He wouldn’t want to miss a single beat.  (Terry, mom of Ben who was born with multiple disabilities)

 

HOME SCHOOLING

 

For some children and families, home schooling is the best option.  Lessons can be paced to meet the child's needs.  Parents can spend more time on difficult subjects or can use alternate teaching methods.  They can choose their child's friends from other home schooling families, and generally those children are quite accepting of differences.

 

If you home school, cooperate with the local school system.  Most school systems want a letter of intent to home school plus an outline of the year's curriculum, including texts, tests, and goals.  Meet with school officials and let them know your plans.  Be prepared for convincing arguments and promises aimed at having you change your mind, but stick to your guns.  Let the school system know that you feel home schooling is best for your child, but add that you will keep them informed of what you are doing.  Then do it!  Turn in to the school system copies of major exams and reports.  Each year request a meeting to update school officials on your child's progress.  If you wish your child to re-enter the school system, your child's achievements will be well documented, and the school will know that you are a cooperative and responsible parent. 

 

When we adopted Kay-Marie, she was almost seven years old and still did not know all the letters of the alphabet.  We enrolled her in public school kindergarten. However, with her entering puberty early and dealing with learning difficulties, Kay Marie was forming the opinion that she was bad and stupid.  Wishing to avoid a self fulfilling prophecy, I did what I once swore I would never, ever do.  Home school my kid.  We began home schooling in grade four, with an approved curriculum, a special education consultant provided by the curriculum company, and the full cooperation of the local school department.  We linked up with two home schooling parent groups so that Kay-Marie would have contact with her peers.   When Kay entered ninth grade, we enrolled her in the public high school and worked with the guidance counselor, special education department, and school supervisor to create a curriculum in which Kay took specials at the high school but continued to be home schooled in academic subjects.  She did very well.  Upon graduation four years later, she enrolled in a six month floral design school. (Madeline, mom of Kay-Marie who was born with two lower limb deficiencies and other special needs)

 

SIBLING RIVALRY

 

Perfect families and perfect children do not exist.  All parents get frustrated and every child is difficult to raise in some way.  Accept your limitations and those of your spouse and children. 

 

Every child finds something specifically objectionable about each brother and sister.  If children don't complain about your special child's limitations, they'll find something else to object to.  Children may think that, if their sibling had no disability, she would be the perfect playmate.  This is a fantasy.

 

Most children think that siblings get more attention or better treatment than they do.  Siblings are often jealous of one another and compete for parental attention.  Your child with  special needs will compete, too. She may use the disability to gain favor or attention.  Other children may invent or exaggerate problems to combat parental concern for the sibling. 

 

You won't eliminate sibling rivalry, but you can minimize it. Here are some tips:

 

·         Keep the child with a disability from becoming the focal point of the family. 

·         Try to spend as much time as possible with each child. 

·         Do things together as a family. 

·         Have a weekly "date" alone with each child. 

·         Find, foster, and praise each child's special talent, especially in the presence of others. 

·         Treat the kids the same.  Punish and reward them the same. 

·         Give each child chores. 

·         Don't treat your special needs child with kid gloves

·         Don't compare one child with another. 

·         Establish rules and enforce them. 

·         Respect your children's desire to not always be attentive to the needy sibling. 

·         Don't make one child the slave of another. 

·         Allow your children to participate in sports, clubs, artistic endeavors, and other recreational pursuits.  Driving children to events can be tricky, but perhaps you can car pool or arrange for another parent to pick up your child. 

·         Begin a club in your home.

·         Don't unconsciously try to have another child compensate for the child with the disability. 

 

Let your kids be themselves.  Some siblings will spend a great deal of time ministering to their brother or sister, but thinking of them as little saints is unfair.  Allow them to express negative feelings and to relax their ministrations without feeling guilty.  Other children will complain about nearly everything they "have to do" for their sibling.  They may act out to get your attention.  Resist labeling these children as "bad" or "selfish."  Both saint and sinner are competing for parental love and affection.  Every day determine how you can show that love and affection to all your children.

 

Foster play between your children by praising them when they play well together.  Use toys that lead to interaction.  These include balls, blocks, puppets, bean bags, tinker toys, bowling, tea sets, costumes, plastic food, balloons, dolls, cars and trucks, marbles, and toy telephones.  Activities that foster sibling interaction include acting out stories, playing ___ (school, house, policeman, fireman, doctor, dentist, rock star, fantasy figure, space hero, a type of animal, etc.), fixing simple snacks, singing, interactive sports (baseball, ping-pong, video games, fantasy games, cards, table games, dominoes, checkers, frisbees), marching, tag, hide and seek, taking a walk.

 

All his siblings loved Joey and treated him well.  His two year old brother had a special bond with Joey and tried to make him smile and laugh by acting goofy.   We used to put wigs on Joey and dress him up and enjoy him. He was in the family room and slept on the couch so he was in the middle of everything. (Erin, mom of Joey who was born with Trisomy 18)

 

Your attitude toward your special needs child will influence how your other children view him.  Being positive pays off.

 

We are stronger spiritually, our children are more compassionate than their peers in general, and our family is stronger and more tightly knit than most families I know. Our kids are now 21 and 26, and they have a compassion that is unusual, especially for their age. Of all their friends, they say ours is the healthiest family. I think having Nathan in our midst helped a lot, but I think we also probably handled it right because I know some other families have fallen apart when they had a disabled child born to them. Part of it is our faith—knowing that God loves us and that everything that has happened has been part of a greater plan. And part of it is probably my personality—I just tend to find the bright side to most things, and I’ve helped our kids to see things that way overall.(Jennifer, mom of Nathan who was born with Menke's Disease)

 

Beware of being overprotective. Overprotecting children gives them the disability of unnecessary dependence which hinders a person forever. Letting your six year old play alone in the back yard or your eight year old wait for the bus alone does not mean that you are neglectful or taking chances. It means you are allowing your child to mature and trusting him to make good decisions. 

 

When our twins were born, Marie was fine but Tina had no hip on one side and only a partial thigh on the other.  Doctors told us that she would never be able to sit up by herself, so they made her a sitting prosthesis when she was three months old. After using it for three weeks, she was sitting up by herself.  The doctors said that she would never be able to walk without crutches, but she learned to do that.  Today Tina is married and working as a Children's Museum Coordinator.  She wears a bucket prosthesis and lives a very normal life.  What a child can achieve is very much an individual case.  It also depends on what the parents will allow the child to do.  We had a five year old and a three year old son when Tina and Marie were born so it was difficult to be protective of one when we had the other three.  Tina learned to take her lumps, and she did well because of it.  (Gloria, mom of Tina who was born with lower limb congenital amputation)

 

SHARING WITH YOUR CHILDREN

 

Let your children know that they can discuss anything with you, even their negative feelings.  This is especially important for older children who may not want to upset you.  Help your children understand that feelings are not right or wrong.  They express emotion and ought to be openly dealt with.  If your children do not discuss feelings with you, they may seek out friends who may have much misinformation.  Or they may never air their feelings which is emotionally damaging in the long run.

 

If your child seems unconcerned about her differently abled sibling, do a little emotional "digging."  Your compliant child may not want to worry you while inside she may be fretting.  Making up a story can sometimes open communications.  One possible story appears in Appendix F.

 

Children often have many questions.  What is wrong with my brother?  Why did this happen?  Is my sister in pain?  Will this happen to me?  Why does she act so strangely?  Does he love us?  Will she ever be able to ______?  What am I supposed to do with my sister?  Will my brother die?  Be honest and truthful.  Explain the situation in terms your kids can understand.  Children can accept more than you realize. 

 

You may be able to find some children's books on a particular disability.  Read the books before sharing them with your children to be sure that the attitudes in them are the ones you want to foster.

 

How you respond to your children either fosters or hinders communication.  Foster communication by asking a question, not issuing a command or reprimand. Compare these different responses to the same comments.

 

Johnny:  I can't stand it when Jane moans like that.

Mom:  (response that shuts down communication):  You shouldn't feel that way. She can't help it.

Mom  (response that fosters communication):  I know it is troubling.  Jane's moaning bothers me, too, even though she can't help it.  What do you think we can do to help her and us?

 

Sara:  I hate Billy.

Dad (response that shuts down communication):  What a terrible thing to say! He's your brother!

Dad (response that fosters communication):  I'm glad you shared that, Sara. Why do say you hate Billy?

 

Marie:  You like Peter better than me.

Mom (response that shuts down communication):  I certainly do not. I love you both the same.

Mom (response that fosters communication):  What makes you think that I love Peter better than you, Marie?

 

Siblings often have good advice. Discussions with them may spark suggestions to make things more comfortable.  Older siblings may want to be part of meetings with professionals or may wish to teach their special sibling certain skills. Encourage these things.

 

Be very careful not to minimize problems by comparing them to what your child with a disability can or cannot do.  Every problem is important to the person experiencing it.

 

Justin:  Why do you always make peas, Mom? I can't stand them.

Mother (response that shuts down communication):  What are you complaining about? Laura would love to eat peas if she could.

Mother (response that fosters communication):  Everybody has foods they don't like, but it's good to try all kinds of foods.  Tomorrow I'll make corn. You like that better than peas, don't you?

 

Gracie: Dad, I have to have those sneakers. Everybody has them.  Pleeease.  Everybody thinks I'm a dork because I have to wear these dorky shoes.

Dad (response that shuts down communication):  Can't you see we are in the middle of a crisis with Sam?  Why are you worried about a pair of sneakers when your brother can't breathe right?

Dad (response that fosters communication):  Oh, Gracie. I want to talk to you about those sneakers.  But your mom and I are trying to get Sam breathing right again and we have to do that first.  How about if you go and find an ad with what you want and we can talk just as soon as we know Sam is OK? 

 

If a sibling has an especially difficult time dealing with a brother's or sister's condition, consider professional counseling.  While the phone book can provide referrals, the best ones generally come from other parents.  Hospitals or places of worship may be able to recommend local parent support groups or individual parents.  Your child may benefit from attending a sibling support group.

 

DISCIPLINE

 

If you think a child is manipulating to gain attention or favor, try to find out if your feeling is correct.  One easy way is to try to distract the child from the complaint while providing attention to the child. A child won't generally be distracted from a legitimate complaint.

 

Mother is in the midst of trying to feed four year old Jerald who cannot feed himself.

Amanda:  Oh, my stomach hurts, Mommy.  Ooooh.  I don't feel good.

Mom:  I'm sorry to hear that, Amanda.  Oh, I just thought of something.  Aren't brownies your favorite?  How would you like to help me make some for dessert? 

 

If Amanda really has a stomach pain, she is going to say she does not want brownies; she wants her tummy to stop hurting.  Mom ought to then check Amanda.  If Amanda wanted to take mom's attention from Jerald, Amanda will be excited about the brownies.  Mom can instruct her to get the bowl, pan, and spoon ready while Jerald finishes his lunch.

 

YOUR CHILDREN'S FRIENDS

 

A child with a disability can embarrass siblings if the parents try to keep the child out of the public eye. .  Take the family on outings.  Help your children understand that those who make fun of folks with differences are to be educated and maybe pitied. 

 

Have friends over to play with your other children and explain the disability to them.  Tell them how they can help.  Point out something, such as a smile or a liking for certain foods, which shows how much your child is like other children.

 

Work with your children's teachers to bring your differently abled child to the classroom to help educate the youngsters.  The teacher can prepare the class and you for this interaction.  Have classmates interact with  the special needs child.  Explain what the child can and can't do.   Obtain beforehand the names of children who are most likely to bully or ridicule and have them do something positive with the child.  Praise them for their efforts.  The goal is to have schoolmates see the differently abled child as a person and to understand that bullying or making fun of a person is something no child would ever want to do.

 

As my son Matt said when Jonny was a just a toddler:  "Wouldn't the world be a better place if everyone had a brother with Down syndrome?"  (Barbara, mom of Jonathan, Jesse, Daniel, and Justin all of whom were born with who was born with Down syndrome)

 

YOUR CHILD AS AN ADULT

 

As your child matures, allow her make decisions according to her maturity level.  Teach him to be as independent as possible.  Integrate your child into the world.  Provide the training she needs to be successful.  Have him do things for himself.  Speak to lawyers and other professionals about trust funds, housing, social services, and financial aid.  Appoint a guardian for your child should you die unexpectedly.  Draw up legal documents for the disposition of your estate as it relates to supporting your child. Share with your other children any long and short term plans your make.  Siblings have a right to know how responsible they will be in the future for their brother or sister.

 

It's been really hard to think about Kelsey getting older and getting a place of her own.   At first, I thought, "I could never do that--let someone else take care of her."  But we have some other friends that also have children with disabilities, and we are looking at buying a house together and then the agency would help us to support the kids because we can't expect the state to take care of our kids forever.  If we don't do something, then we may not have a lot of choice about where our kids live.  We really want Kelsey to stay in this community because this is where.people know her, where her friends are.  If we get some families together to buy a house, then the state will help us to provide supports for our kids as they get older. The biggest expense for supporting our kids is hiring staff.  Kelsey needs somebody around the clock.  We have actually started a corporation. It's a little bit scary, but you have to do it. (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

When Christopher was about twelve, I began thinking about his future.  The Sisters of Mercy operate a home for the mentally handicapped.  Christopher can be put on a waiting list and we would be just as proactive in his care if he were accepted into the home.  (Mary, mom of Christopher who was born with multiple disabilities)

 

Your young adult may have sexual feelings and thoughts even if he cannot express them or would find it difficult to function sexually.  Everyone has a need for affection and love, and these needs can mature as sexual attraction.  Communicate with your child about her feelings.  Explain pitfalls and sexual predators in terms your child can understand.  Your young adult will have to learn to handle her own sexuality, but your instruction will provide the guidelines. 

 

I'm 29 now, have just had my first baby, who is perfect! I live life fairly normally, although typing is a little trickier for me than most!! I have a great family, loving partner (Kirsty who was born with deformities of the hands and feet due to amniotic band syndrome)

 

When your child enters the world of adulthood, he or she will be well prepared because of you.


 

 

[1] Ann Waldrop, "Dreams."  You Will Dream New Dreams by Stanley Klein and Kim Schive, Eds.  New York, New York:  Kensington Publishing Corporation, 2001, p. 113.