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Building New Hopes and Dreams

When you first learn that you are going to have a baby, you instantly start dreaming of the hopes and promises of your child’s life. Maybe you’ll have a boy and he’ll play soccer, or you’ll have a girl and she’ll grow up to be a ballerina. Someday, your child will get married and have kids. She’ll get a good job and maybe even become president. But then, at some time in your child’s life you learn he has special needs. Maybe it happens right after she is born, or maybe it is two years or twelve years or even twenty-two years down the road. No matter when it happens, those hopeful dreams seem to blow apart instantly.
With this heartbreaking news will come many emotions. You may feel denial, sadness, anger, alienation, fear, helplessness, confusion, and many other things, and you may feel all of these things at once. These are all normal feelings that parents go through when they have been given the news that their child has a special need. It’s important to feel and process that overwhelming grief and despair, and at times it can be so painful that it feels like it is consuming you and your life. Realizing that these states of grief you experience do serve a purpose in coping and building resilience. It is important to know that you are not alone and there may be effective ways to get you through the rough patches, which may include talking to another parent who just “gets” it or talking with your own healthcare provider for some medical advice, interventions and treatment if needed.
As a mom, I am all too familiar with these feelings. My son contracted spinal meningitis while he was in the hospital as a baby. Meningitis is a serious or a severe infection caused by a brain inflammation of the membrane covering both the spinal cord and brain. When my husband and I asked what that meant, the doctor told us my son could experience long-term effects, including Cerebral Palsy, developmental delay, cognitive disabilities or even death. We instantly began to wonder if our son would ever grow up or be married and have kids of his own. Would he graduate from high school? Our dreams were suddenly thrown into question.
In the next year, I experienced many complicated feelings. Instead of doing the things you normally do with a baby, we were busy with multiple doctor appointments every week, therapies, and the intense questions about what would happen in the future. After what seemed like a grueling year my husband and I were finally told that our son did, in fact, have Cerebral Palsy. Through everything, I think the hardest thing was the not knowing. Once our son was diagnosed, we knew what we were facing and we could deal with it head on.
Although it was good to know what we were facing, I looked back to when I was pregnant and how I read all the books about pregnancy and newborn care. Nothing that I had faced up to this point, and nothing I was about to face, had been discussed in any of those books. I was writing a new book, a different book full of different things to expect. I had blank pages and didn’t know how the story would go. So, with these new experiences we started writing our own story, and filling those blank pages….
After those first couple of years, I began to get a handle on my emotions. My family was handling our “new” life more gracefully, and we realized that this new book was not what we expected at all, and that was okay. We also realized that there were some things that are far more exciting than the book we thought we were going into.
In having a child with special needs, I realized that he does not always hit the typically expected milestones, and this made every little thing my son accomplish, that much more exciting. I had assumed that every child would automatically know how to suck on a bottle, or that a child would learn to talk and walk at the right age. Instead, I learned how to thread a feeding tube down my son's throat to feed him, and took him to an endless string of speech therapists. But when my son sucked that first ounce from a bottle, I jumped up and down, and maybe even cried tears of pure pride. It was a feat as exciting as seeing my child become president!
Our book is still in the first few chapters. We continually write a little more every day and hope to have years and years of chapters ahead of us. It started out rough, but now, if I could go back and give myself some advice it would be this – have a positive attitude and know that your child is still your child first before any diagnosis or special need and they can and will accomplish amazing things, even if they are different things than planned! You might not feel this way today, but there may come a time that you’ll see all of the positive things about your child, and see the many blessings or gifts that a child with special needs brings to a family. If I had the option today to change my son, my personal answer would be, no thank you. He is the person he is today partly due to his special needs. He is able to touch people that no one else can because of where he is in his life. He teaches me every day to look at the bright side of things.
I am excited for the rest of our story. I want you to know that your story can and will be great, too.
On the rest of this page, I’d like to share with you some of the things I’ve learned through my own experience, and some of the wisdom that has been shared with me in friendships I have developed with other parents of children with special needs.

Remember first and foremost to choose hope

Dr. Jerome Groopman states, “Hope is a decision, not an emotion nor a feeling.” From a parent’s perspective as long as you have hope, you can overcome the most difficult of times or challenges.

Each situation is unique, but our challenges are often similar

My son was still very young when we learned he had Cerebral Palsy. Some children get a diagnosis early on, sometimes even before birth or much later due to illness or accident. Regardless of when or what the diagnosis is, it will be difficult to see your child not achieving typical milestones, dreamed expectations or optimal health. Most families experience similar feelings and challenges and therefore can be a rich source of support, information and assistance.

Remember that knowledge is power

When you work with doctors and medical professionals, you may find it awkward to question them about services for your child. It’s important to build trust with them, as your relationship with them is likely to be long-term. Although they have had years of medical training, you have the training on your child. You have a voice, and you can tell them how you feel and what your opinion may be. Sometimes your feelings may not even make sense, but parents often have intuition that can make huge differences in their child’s life. Don’t be afraid to ask questions to understand what you are dealing with. You are the one who will take this child home after the doctor visit, and knowledge will help you to be more confident as a caregiver. You are your child best advocate!

You will build new friendships

You may feel lonely for a while, as some of the people you know cannot begin to understand what to say or how to react to your new situation. As you navigate through the special needs community with your child, you will meet new friends in new circles who will understand. You will meet other parents who have children with special needs that you have a common bond with. You might meet someone at the doctor’s office, or at a support group, or in an online group. Seek these people out. Some of them will become life-long friends, and the bond you share may be greater than you have ever had with other friends. These friends will understand that part of you and your family that others may not, and you will understand what they have gone through. Your other friends who are having a hard time understanding what you are going through may come around and get it, so don't give up on them – we need all the friends and support we can get!

Find a parent support group or others who are going through similar situations

You can find groups or fellowship through your local hospital or online. There are various support groups for parents in general, siblings, and grandparents or just for dads. Research and find credible groups that will help you not only survive but thrive; the health of parents produces the best care for the kids.

Set up a support system and don’t be afraid to ask for help

When people ask, “What can I do to help?” be ready with a list of things you need. Ask them to give attention to your other children, or come sit with your child with special needs while you run errands or have a date with your significant other. Sometimes friends or family may be reluctant to stay alone with your child because of medical or behavioral issues they are not comfortable with. Instead you might suggest they help by just being there with your child while you and your spouse watch a movie or go out on the back deck for some alone time. These seemingly small things can take some pressure off of you and give you a chance to relax and refuel yourselves. Many times people don’t know what to say or how to help and it can start to alienate us from them, and them from us. Many friends and family members feel for us, and really want to help, but don't know how. If we can help them to be involved and included, they can learn to accept things and can grow in this adventure with us.

Keep a binder with all of your child’s information

This can be helpful for frequent hospital or doctor visits, when it’s important to have the information at hand. Many times we are stressed in these situations and forget things that we thought we could never forget. You can find a health care notebook on the Care Notebook page.

Seek out available resources

There are so many resources out there for you to get information. Below, you’ll find a few that can help your story be a success. There are organizations to help you find resources and refer you to agencies that may be helpful.

Family-to-Family Health Information Centers (F2F HIC)

These are organizations that have families helping families navigate the healthcare system, funding and family support resources. The family-to-family model is one of the most comfortable ways to find resources, as you are speaking with someone who has an understanding of what you are going through. To find one in your state go to National Center for Family - Professional Partnerships (F2F HICs).

Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs)

Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) are organization that provide parents with information and training about disabilities, rights, roles and responsibilities in the education system and resources in the community, state and nation. Every state has at least one Center. Find your parent center at Center for Parent Information and Resources Locator.

Early Intervention

If you are concerned that your child is not developing at a typical age level you can call Early Intervention and have them come and evaluate your son or daughter. They work with kids from birth to age 3 and provide service coordination to help families connect with resources and information early on. Find Early Intervention Service, which is also referred to as Part C in your state at State Part C Early Intervention Coordinators.
211 provides free and confidential information and referral at 2-1-1 North America.

Resources

Services

Family Support, General

See all Family Support, General services providers (54) in our database.

Local Support Groups, Disability/Diag

See all Local Support Groups, Disability/Diag services providers (174) in our database.

National Support Groups, Disab/Diag

See all National Support Groups, Disab/Diag services providers (45) in our database.

For other services related to this condition, browse our Services categories or search our database.

Authors

Authors: Shena McAuliffe, MFA - 7/2014
Tina Persels - 7/2014
Reviewing Author: Gina Pola-Money - 7/2014