Coping with the News that Your Child has Special Needs

Receiving the News

I remember very clearly the day our pediatrician told me and my husband about our daughter's disability. She had been born eleven weeks premature, and we knew she had suffered some brain damage during the emergency c-section, but despite those facts, we still hoped for the best. At six months old, we knew she was behind developmentally, but we thought it was because of her prematurity. At the doctor's office, however, we found out differently. He told us it looked like she had symptoms of cerebral palsy and that the best thing for her would be to get involved in occupational and physical therapy right away. My husband sat there, stunned. I held my sleeping daughter in my arms with one question racing through my mind. I had to ask, "Does this mean she could be in a wheelchair the rest of her life?"

When he answered, I began to cry and the doctor came over and hugged me and my daughter.

That was nearly five years ago. I did not cope very well with the news. I felt a myriad of emotions - sadness, guilt, overwhelmed, anxious, scared - all of which led me into a state of depression. If I had known then what I know now, I probably would have had an easier time dealing with this news. That's why I'd like to share.

Acceptance

Acceptance of your child's special needs can be very difficult. Every parent wants their child to be healthy and whole. "As long as my baby's healthy" is often what parents say when asked if they want a boy or a girl. When it turns out the baby is not healthy, it can be very traumatic.

The most helpful thing to accept what is going on with your son or daughter is to grieve what your child may never be. One of the things I had to grieve was that I might never be able to see my daughter take her first steps. A parent of an autistic child may have to grieve the loss of their child ever having an in-depth conversation. Depending on the child's disability, the grieving will be different for each case.

During the grieving process, remember that is okay to cry and to feel sad. It's important to feel these feelings instead of trying to stuff them down deep inside, which could ultimately lead to depression, as it did with me. The important thing is to not stay stuck in these emotions.

Communication

It's important to keep open communication lines while trying to cope with the news of your special needs child. It's especially important to communicate with your spouse since they are going through the same thing you are. There is a scary statistic out there that says the divorce rate among parents of children with special needs is 90%. Try not to withdraw into yourself and turn away from the person you need the most in order to get through this.

It is also helpful to talk to someone who has an older child with the same disability as your child. It helps immensely to find someone who has gone through exactly what you have gone through. Chances are they have felt the same feelings you're struggling with now. They understand your anger, guilt, fear, and sense of being overwhelmed. If you don't know of anyone who has a child with the same special needs as yours, ask the hospital if there is a support group of some kind for your child's disability. If you can't find a group, there is always the Internet. it is full of groups you can join online and ask questions through message boards.

It's good to stay connected with your friends and family as well but they may not know exactly what you are feeling. If you can't find anyone to talk to, I advise talking to a professional therapist who can help you sort through your feelings.

 

Resources

It is helpful to find as many resources as you can about the special needs of your child. We live in an information age, where it is possible to find information about even the rarest disability. Knowing the facts surrounding your child's disability will help you to ask the right people the right questions. Since you will be your child's best advocate you need to know as much as possible.

There are also books, tapes and Cd's out there in which people share how they have coped with their child with a specific disability. One of the most helpful tapes I found was parents of a 20-some-year old son sharing how they coped with his cerebral palsy through the years. I found it from Focus on the Family.

Create Awareness

After you have begun to come to terms with your child's disability, it is good to try to turn a negative into a positive. A good way to do this is by creating awareness of your child's disability. Some ways of doing this could be starting your own blog, getting involved in fundraising and educating others about your child's special needs. As you do this, you will feel like you are making a difference - it not only makes you feel good but it is something that helps your child as well.

More Suggestions

These are all things that have helped me cope with my daughter's disability. Here are some other suggestions:

  • Be sure to take care of yourself - make time for you
  • Don't be afraid to ask for help
  • Ask lots of questions
  • Quit feeling guilty - it's not your fault
  • Don't compare your child to other children with the same disability or with another healthy child
  • Don't keep yourself or your child shut in - go out and find fun things to do
  • If you're a person of faith, pray and ask others to pray for you

Please note, I am not a professional in the healthcare system, this article is written purely from personal experience.

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Comments 29 comments

Ellie Perry 7 years ago

I really enjoyed reading your hub. As a person who has worked extensively with people with children, elders and those with varying disabilities, diseminating this information is so important. People who have not experienced the blessing of a relationship with a disabled person may not be able to really understand the depth of exchange in such a relationship. I have found that one of the most important things I have learned is that people are people are people. We are all beings with inherent dignity deserving love and not condescension.


westernangel profile image

westernangel 7 years ago from Canada

Great hub. I agree 100% with your advice. Acceptance of a child's disability (whatever that disability may be) is very difficult and you do need to go through the entire grieving process, including denial, anger, depression, crying and finally acceptance. I have a son with schizophrenia and that was extremely difficult to accept, but in the best interest of all of us, I had to. We are also foster parents and have two children in our care with disabilities right now and possibly a third will have some disabilities.

They are a blessing though :) and they do enrich our lives.


Cari Jean profile image

Cari Jean 7 years ago from Bismarck, ND Author

Thanks for your comments, they are a real encouragement to me. Children with special needs are indeed a huge blessing. I know our daughter is a gift to us from God.


ericabrobertson19 profile image

ericabrobertson19 7 years ago

great hub! thanks!!


Cari Jean profile image

Cari Jean 7 years ago from Bismarck, ND Author

Welcome to HubPages, ericabrobertson19 and thanks for your comment!


calmmicki 7 years ago

What wonderful insight & great way of sharing it! Hang in there!


Cari Jean profile image

Cari Jean 7 years ago from Bismarck, ND Author

Thanks for reading calmmicki!


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas

Another great one Cari Jean. What you’re doing here is very important. I’d like to link this hub and your other hub about Faith in a "Resources" capsule in my NICU hub.


Cari Jean profile image

Cari Jean 7 years ago from Bismarck, ND Author

rmcrayne - That would be wonderful - feel free to use those two hubs in your resources capsule. It really is important to get his information out there. Thank you so much!


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas

Cari Jean, I finally got your links added. Thanks!


Cari Jean profile image

Cari Jean 7 years ago from Bismarck, ND Author

rmcrayne - You're Welcome!


The Aud1 7 years ago from UK

Thank you Cari Jean - you are telling it how it is and that we are not alone in what we think or feel on diagnosis. For me it was so traumatic and I felt so bad feeling the way I did. We need more openness like yours to help others.


Cari Jean profile image

Cari Jean 7 years ago from Bismarck, ND Author

The Aud1 - thank you so much for your comment. You're right, it is easy to feel bad for how we're feeling which ends up making things worse. I hope you have found healing in your situation.


whiteletters profile image

whiteletters 6 years ago from Ohio

Reminds me a lot of what we went through with our daughter. Although we knew from the beginning that she had brain damage, we kept thinking if we did everything the doctors said, that she would somehow get better. We got over that eventually, though. Now I only notice when I dream she can do something (like say "I love you, Mommy") that she can't do when I'm awake. Otherwise it seems natural now, she's a very plesant happy soul.


Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND Author

whiteletters - thank you for your comment. I know what you mean about dreaming about something that she can do - for me it's when I have dreams that she is walking hand in hand with me then I wake up and remember she can't do that. Thank you so much for sharing.


Rhonda 6 years ago

still trying to accept while holding onto hope that my daughter will run and play with her twin brother some day......


Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND Author

Rhonda - I totally understand where you're coming from. That is the one thing I struggled with is trying to accept and understand while still trusting God for my daughter's healing. I have found that it is possible to do both. Thanks so much for sharing.


jackie.t profile image

jackie.t 6 years ago

I agree totally with your idea that children with special needs are a blessing and a gift from God. I adore my son and wouldn't want it to be any other way. Although my chances of having another baby like him were pretty low, I decided to play it safe, so he is an only child too. Thanks for sharing :)


Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND Author

jackie.t - thank you so much for your comment. I love finding other moms with children of special needs - esp. those who find them to be such a gift!


abbykorinnelee profile image

abbykorinnelee 5 years ago from Ripon Wisconsin

I ran by this by accident as I am new to Hubpages. I was thrown back in time to the day I will remember even more vividly then the day of Sept 11th; being told my suspicion of Autism was valid. I am so very happy to see that your spouse and yourself effectively went through a grief process and both accepted the diagnosis. Unlike my story where I was the only one that was determined to attack a hidden enemy holding my child inside.

Also unlike yourself; I have about finalized a seond divorce. Autism changed my life, my priorities, my goals and transforme into a world that was modified for my son to learn and grow. I didn't know about ABA or intervention. I fought for two years for a final diagnosis. I battle keepin him off medication and an overseas custody batte where his father (a wonderful person and father and was a husband) couldn't accept his son was not an average child. That blame couldn't be placed on my parenting and discipline strategies. I slept with him, I rocked him six hours keeping him from further harming himself. I went the appointments, I did the research, I changed a five year old's diapers. I watched a child virtually normal development regress two months after a DTaP and then violently after an MMR with a week long deathly illness. I saw him talking and dancing and ripping gifts open at Xmas at seven months to a violent, non-verbal tornado. He still doesn't sleep through the night but he is with me; in this world, grade level almost, still off medication.

I applaud this post because its not something we talk about on a day to day basis. I didn't have anyone to share it with. My ex-husband; now a son who is almost nine years old and virtually to the average eye a bit of an eccentric normal kid. His father, on his third marriage (an Autism teacher in CA thank goodness), proclaimed for the first time "My on has Autism".

My seven year old daughter's conference at school I knew was going to be fun figuring out why she is so flighty. I joked with her about being "lost in the sauce." I am going through a divorce with a husband with severe PTSD and deployed in Iraq for the third time, virtually abandoned us and cut us off, struggling to maintain my normal household to preven regression. They tell me to start testing her for Asperger's. Sirens went off and red flags emerged and the room was in slow motion as I dialed their father. In disbelief I told him and I am grateful we have the communication and friendship now to get me through this because even though we are on opposite coasts as he raises our 12 year old who just got his scores on standard testing...100 percentile in Math throughout the state; and I am figuring out how the heck to get this child through first grade. I have emotional support for the first time.

A family who judged every move and choice I made for ten years; my father finally said "You are right, we can't judge you for no one in this family could do what you do every day; on their own, the way you do."

I have my Exhusband and my father; I have my Autism beautiful world I wouldn't give up for anything; my advocacy, my education, my own goals relighted...but to hear this ten years ago; even five maybe things wouldn't hae been this hard. But I don't reret any step I took; but will hold people like you in my heart for words of wisdom no matter how late it comes; is desperately needed.


Cari Jean profile image

Cari Jean 5 years ago from Bismarck, ND Author

abbykorinnelee - thank you so much for your very personal comment and for sharing part of your story. It is great that you are here on HP because if you are like me, writing about these kinds of experiences and receiving encouragement from others really helps. I'm so sorry for all the struggles you have gone through but I can see that it has made you a stronger person and one who wants to be more educated. Sometimes God allows us to go through tough things because He wants to help make us stronger.

We really do change from the first time we hear of our child's diagnosis to where we are a few years later. Not everyone understands those changes but that's okay as long as we continue to what is best for our child. Again, thanks so much for sharing.


b4murray profile image

b4murray 5 years ago from Massachusetts

Nice article, good advice... I am sure my own mother had some of these same feelings

check out my hub if your interested

Thanks


Cari Jean profile image

Cari Jean 5 years ago from Bismarck, ND Author

b4murray - I will check out your profile and hub - thanks so much for your comment.


mrdot profile image

mrdot 5 years ago from New York, NY

Great hub. We covering many illnesses on our website - Autism is on our list that we'll be covering very soon. Feel free to visit, and hope this helps everyone in need.

http://affective.com

Thanks.


Cari Jean profile image

Cari Jean 5 years ago from Bismarck, ND Author

mrdot - thanks for your comment and thanks for sharing your site.


angela p profile image

angela p 4 years ago from Richmond, Virginia

Very encouraging. I remember how I felt when my son was diagnosed with ADHD, Aspergers, and Bipolar. I was numb for so long. I still have moments of disbelief many years later. Usually when he is having a bad day. We get through it and I have learned so much along the way. Mainly how to handle it all and keep my cool. Great hub.


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

angela p - thank you so much for your comment! WE learn a lot as special needs parents, don't we? I'm glad you found this encouraging and I hope it encourages others as well.


Shr 4 months ago

Thank you for posting this very heart touching truth. Very similar to my life. It took me couple of years to accept the truth. Now learning new things everyday through my three years old son with CP. Life has been completely changed. Blessed to have him in my life.


Cari Jean profile image

Cari Jean 2 months ago from Bismarck, ND Author

Shr - thank you so much for your comment. We do learn new things through our children, don't we? I'm sure even parents of kids that don't have special needs find this as well! Blessings to you and your family.

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