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Parental Acceptance and Advocacy: Hijacked to Holland Coping with the Shock of Disability

by Sally, Mom of Brian, Brooke, and Anthony

(published in SUPERTWINS Volume 7 #2 - December 1996)

There is a well known essay, titled Welcome to Holland, that circulates periodically throughout the community of families with disabled children that is a pretty good analogy of what it feels like to discover that your child has been labeled handicapped. The story goes something like this: a traveler is on a plane flight to Italy and is greatly looking forward to a long planned trip to Rome and all the wonderful sights there; but instead the airplane lands in Holland! Now, Holland is nice, but it is not Rome. The traveler is confused and disoriented but after a while in Holland the beauty of that country begins to be apparent. The flowers, the windmills and the countryside are lovely and pleasing, so the traveler is satisfied with the trip and destination; although it is not Rome, not what was planned on.

The analogy is that during pregnancy, expectant parents are on a journey that culminates I the birth of a healthy baby to love and nurture. However, to a parent whose child is not healthy, it feels like a hijacking-this is not what the plan was! There is a confusion of feelings about this wrong turn, but as time goes on the parents slowly become oriented to this new reality. After all the baby is their baby, the one expected and long awaited for, the one they love. They learn about their child's uniqueness and hopefully over time they come to accept this reality and are satisfied. A healthy baby would have been wonderful but they can and do love this child.

One reason I like this story is because it speaks to the feelings a parent being cheated when their baby or child is not "normal". I speak about this from the parent's point of view not the child's because the parent's feelings are the ones that surface first. Sure, the child experiences the same feelings of loss as they grow. However, parents have to deal with their feelings first and grieve the loss of that normalcy in their lives before they can teach their child how to accept and cope with their disability.

It is important to remember too, that parents and children will not grieve just once and have the hurt over with; many times they will suffer through periods of pain during the child's developmental years. For example, the experts suggest that comparing a disabled child's slower rate of developmental milestones to their siblings faster achievements triggers a grieving period. And if the siblings are the child's non-disabled triplet the family gets their first dose of this in a glaring way! This is what happened to us. Our 5 year old son Anthony has spastic diplegia cerebral palsy (CP) and his triplet sister Brooke, and his triplet brother Brian, are developing normally. When Brooke and Brian started rocking on all fours in preparation for crawling, then crawled, then walked, my husband, Bill and I were depressed-and we were sad. You see, Anthony could not even closely begin to sit up by himself, plus he was so sick from factors related to his CP and from being born twelve weeks early, that his life was so much harder compared to theirs. There is no remedy that I know of that will take away this kind of hurt quickly and that is good because the necessary result of feeling sad, angry, guilty, shocked, lonely, etc., is acceptance of the way things are. ACCEPTANCE. As we go through each one of these wretched periods during the time we have to raise our children, then we are helping equip them to cope in a society that places utmost value on perfection.

So now, here you are, a parent who is embarking on the journey of coming to acceptance in this strange land and you want a map? First your entered the World of Multiples and now you are in the Land of the Disabled. Where do you begin? Well, I have good news for you since I have traveled down the road for five years in both territories. I have brain stormed my advice for the journey. Of course, you will personalize it for your trip and you will take wrong turns like I did and those before me but we always find our way.

Your Child's Development is Not Normal...What Do You Do?

• Obtain an accurate diagnosis. There are many ways to obtain a diagnosis for your child. If you are not sure whether your child's development is on track then contact your county's Dept. of Health or ask for a referral from your neonatologist. If further evaluation is necessary then you will be referred to the Early Intervention Program (EI) for screening. If you know that your child is not developing normally, then contact EI directly. EI is an extension of the school system and there is no charge for their services. The NICU may have referred you directly if your child met certain criteria there for at-risk status. This may include birth weight, gestation, and course during NICU stay.

• Find out about early intervention services. These steps may identify your child for eligibility for EI services but WILL NOT give you a specific diagnosis. Your child should be seen by your physician for that. You may want to take your child to a specialty hospital (ex. Shriner's) for more specific information regarding your child's diagnosis. I have found that the more places Anthony is seen, the more I can balance out the opinions I receive and the better I can understand his unique body.

• Get info about the disability. Ask medical professionals for recent titles. Sometimes medical information is outdated quickly as understanding about conditions increases. Use the EI library for books and magazines. If your child is assigned a Mental Health Case Manager she can help research the disability for you. Use the county library, ask the reference desk for help. Network with other parents to share information and tricks. More minds working on an issue are better than one. The end result of this research about your child's disability is to gain more knowledge because you are now your child's advocate. It is your responsibility that he get the best medical care and educational opportunities.

• Use respite care. Respite is defined as an interval of rest or relief. When you are caring for someone with special needs you need to take care of yourself so you can keep giving the best care to your child (not to mention enjoying your husband and children). First use your family and friends. You are not imposing on them. People want to help. If they do not offer, ask. Do not be shy. You and your family need it. You may qualify for respite through the Respite Program in your state or county. Inquire to see if you do. They can sometimes help with expenses and give referrals of trained providers. One family I read about even took out a loan to pay respite. They were ridiculed by their family for it but they stated that after the loan was paid back they were still married! That was worth it!

• Seek funding sources. Depending on your child's diagnosis there my be added expenses. Medical care, equipment, respite, and/or technology to suggest a few. Check with Social Security to see if you qualify for SSI. Your child's case manager can help you to know what is available in your community. We have received help from the Special Materials Fund for equipment, Respite Program for respite, Mercy Foundation for help with Pediasure (special food), and Family Support for sidewalks and a ramp to make our home more accessible. Our medical bills are our biggest expense behind taxes so we really appreciate any help we can get (call MOST for the state agency number for your area).

• Get politically involved. Down the road a ways you might want to get politically active. It seems that when there is a cut in programs guess who gets cut-the ones who are weakest and less able to advocate for themselves. So to protect the inroads that have been made in the last years, it takes constant safeguarding to make sure that hard won victories in Congress are not eroded.

• Get support the siblings. Triplets and more have a special bond. Our children are all fiercely loyal to each other. However, I expect that our normally developing children will someday appreciate learning about how others have coped with a disabled sibling. Some of Anthony's caregiving will eventually fall on his brother's and sister's shoulders. They need to know that they are not alone with this special responsibility. Plus, there are many thoughts and feelings that they may have that they need to know are perfectly normal, even if they don't seem particularly loyal. A good website is The Center for Children with Special Needs They are promoting the book: Living with a Brother or Sister with Special Needs: A Book for Sibs, Second Edition, Revised and Expanded (1996), by Donald Meyer and Patricia Vadasy, Drawings by R. Scott Vance, University of Washington Press.

• Involve Children in Health Care Decisions. There is a developmental and cognitive level in your child's growth that will require the child to be involved with what happens to their body. How much say the child truly has is a personal decision for each family. Our son is stressed when he hears me talking over his head to professionals about him. He internalized it so I am not aware of his feelings at the time. Since our child is still young my husband and I have decided that we will make the decisions for him and we will fully explain to him what will happen, when, and why it is being done. No surprises. That is what works best for our special family.

• Access Internet resources. Most people are aware of the vast resources available via the internet. If you don't have access to the internet in your home or work office then check out your local library. Perhaps you have a friend who would not mind if you "surfed" on their computer. I have been able to network with other parents of special needs children, some with triplets, some not. My top three favorite disability sites are:

  • National Information Center for Children and Youth with Disabilities
  • Our Kids

   

Updated 9/26/08