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Grieving The Child You Thought You Had

Updated on July 12, 2014

7 Stages of Grief

1. Shock and Denial

You feel numb and disbelief that this is happening to you. You may go through some denial about what you have heard in getting the diagnosis.

2. Pain and Guilt

As shock wears off it is replaced with pain that can feel unbearable. Don't avoid the pain allow yourself to feel it, don't try to replace it with other things that might cover up. You might feel guilty, did you do something for this to happen, was it your fault. Life will feel really chaotic.

3. Anger and Bargaining

Frustration gives way to anger. You may lash out, usually at loved ones and place blame. You may ask yourself. Why me?

4. Depression, Reflection, and Loneliness

You start to realize the true magnitude of your loss and it depresses you. You may isolate yourself, on purpose, thinking no one could understand what you are going through. Having feelings of emptiness and despair.

5. The Turn

Depression lessens and you get back into your routine, you start to deal with the physical pain and start to move forward.

6. Reconstruction and Working Through

Your mind starts to work again, clearing the cobwebs out and almost waking up. You become more functional and seek realistic solutions.

7. Acceptance and Hope

Learn to accept and deal with the situation. Acceptance does not mean instant happiness. You will start to look forward and plan things for the future. Find joy again!

The Child You Thought You Had

Grieving is a natural process and most of us relate this feeling to a death. However, the grieving process can happen to anyone going through a very traumatic event. In this Hub I am going to use it in reference to the diagnosis of your child with a special need, more specifically, detailing our experience with our daughter Chloe and her Autism diagnosis.

You start out with this beautiful little bundle of joy and naturally your heart soars and you imagine her doing all these amazing things and you see her future as having all the bells and whistles that she could imagine. The images of her graduating kindergarten, high school, then college. Her finding a job that she is passionate about and makes her happy. She starts to grow and you find that some things that other kids do are not coming easy to her but hey everybody says you shouldn't compare two children. She grows some more and she doesn't look you in the eyes, she doesn't want to be held, or kissed. Then the moment you have been waiting for her first words momma, daddy, love you, all you here is silence and some senseless babble. You cry at night wishing you could just hear those words and desperately wanting to talk to her but she doesn't even turn when you call her name. You work with her everyday and start reminding yourself on a daily basis she will talk she just needs some time. You start thinking about how your other child talked non-stop at 2, but she just isn't ready. Time marches on and you have this feeling in the pit of your stomach that something isn't right. Do you listen to family and friends saying you are just being paranoid and there is nothing wrong or do you follow your gut?

What I detailed above is exactly what we went through with our Chloe, and the answer to the question is I followed my gut. We made an appointment and had her checked over and got the first diagnosis of Sensory Processing Disorder. If you have been reading my other blogs you know that we still were full steam ahead and still had high expectations of how our daughter would adjust to the world around her and how we would tackle this diagnosis.

The Next Step

Even with the Sensory Processing Disorder diagnosis I can say that I was alright with that and my expectations were we get her into therapy we control her sensory input, get her on a sensory diet and viola we are back on track and everything is going good. Fast forward to one year later, she still isn't talking, I mean she is getting some single words but now we have more meltdowns to deal with and frustration when she can't tell us what she needs. We have been in Occupational Therapy and Speech for a year and it feels like we are moving at a snail pace, compared to what I thought we would be doing at this point. Is it too much to ask to hear our daughter's speaking voice? I start asking myself; Why Me?; What could I do differently?; Am I not doing enough?

Then the feeling comes back, we are approaching a year and a half and I'm feeling deflated, struggling to put on a happy face and wishing that she would wake up and just start talking full on sentences. I know it was an unrealistic thought but I'm a mom, I love my daughter and I want her to be happy. We discuss and decide that we should get our angel tested for Autism. My mind goes into over drive and the time just ticks away.

Chloe and Me!

Me and Chloe our first pic!
Me and Chloe our first pic!

The Day Comes

At this point our daughter is two and a half years old, we have made the trip to Riley Children's Hospital and got the finally diagnosis of Autism. Now, this is where the grieving process really begins. All the dreams I have for my daughter shattered into a million pieces. Will she ever talk, will she ever have friends, will she be able to attend main stream school, so many things that should be easy will not be easy for her, yet I'm still standing. This is the part where you would be thinking where do you go from here just live day to day and expect nothing. WRONG!!!

When the doctor came in and told us that our daughter has Autism, I had a realization I wasn't losing the daughter that I thought I had, I was finally understanding the daughter that I had. I can't even tell you what a weight that was lifted off my shoulders. I had spent almost 3 years trying to place her in the box that I thought she would fit in only to realize her box doesn't look like that, it isn't bad it is just different. I felt like I was meeting my daughter for the first time, I got it! I actually got it, now I could understand her behavior instead of being afraid of it, I had direction, just because the dreams I have for her changed it doesn't mean they are less. I realized that when I stopped thinking about what she couldn't do, I could focus on what she could do! I changed my thinking and no longer felt the grief of having a child that had special needs. I started to appreciate the daughter that I had been given.

Chloe's End of the Year Party

Chloe's end of the year party, completing her first year in early intervention preschool!
Chloe's end of the year party, completing her first year in early intervention preschool!

Give me your thoughts!

Have you started the grieving process?

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A Revelation

I had wrote this blog thinking that I hadn't gone through the grieving process. I added the steps in order to show what they look like and things that parents can watch for and expect but realized I had in fact gone through the process. Mine just started in the very beginning and I completed the grieving process when we got the finally diagnosis of Autism. I couldn't believe it but in my own way we had cycled through all the steps and getting the diagnosis was what freed us from all of it. I want to share with parents that it is alright to go through the process and it is alright to feel those emotions. Allowing yourself to go through it can be a benefit to you and your child, you can move forward and start planning for her future and find the joy in her abilities, not focus on her disabilities. There was never a time that I was upset with the child I was given I was just upset that I couldn't understand but going through the process I was able to appreciate her and love her for who she is and who she will be! I still have the same dreams and I don't underestimate her abilities because everyday she proves to me that she is a very bright, loving, caring, and humourous little girl. I believe I might have touched on this in one of my other blogs but I get this amazing miracle of seeing life in a whole new way. I feel very fortunate and look forward to our future, will some days be hard? Yep! Will some days be frustrating for her and myself? Yep! But some days will be beautiful and every day will be special!

Art Time

Chloe doing some Art!
Chloe doing some Art!

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    • Theresa Franklin profile image

      Theresa Franklin 2 years ago from Hemphill, TX

      'Grieving' was the only way I could describe what I went through when my child was diagnosed as special needs. I grieved the child I thought I had and the one I didn't know exactly what to do with.

    • denise.w.anderson profile image

      Denise W Anderson 3 years ago from Bismarck, North Dakota

      My daughter with emotional disabilities is now 26 years old, soon to be 27. There have been many times that we have gone through the grieving process with her. The most recent of which was when she was in the state hospital for several months. We didn't know what the outcome would be, we simply hoped and prayed that she would be able to come home. As difficult as it is and continues to be to live with the issues of her emotional difficulties, we realized that we wanted to keep her with us as long as possible. It is funny how our priorities change when we realize what the alternatives are!

    • profile image

      April 3 years ago

      Great post Anna.