Learn Your Special Education Laws, Special Education Rights, and Share IEP Goal Ideas

Jul 25
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by Doug Goldberg

When you first start talking about having children you dream about your life as a parent.  A lot of the dreams incorporate sharing your passions with this child.  This could include playing sports, an instrument, learning to draw or paint and many other of life’s passions.  When learning your child has special needs the loss of this dream will trigger strong emotions.  These emotions are similar to learning about any of life’s losses and will require the person to go through the five stages of grief. 

Stage 1:  Denial

Denial is the worst stage for a child with special needs.  Early intervention is critical and if a parent is unwilling to believe they have a child with special needs crucial time is lost.  Some parents never get out of this stage and the only one that loses is that poor child.  It is a parent’s job to be their child’s advocate and that can’t happen until they come to terms with the disability.

Stage 2: Anger

Once in the second stage, the parents recognize that denial cannot continue.   In this stage the child starts getting the crucial help they need but often times the parents alienate themselves from their friends, family and often times each other.  During this stage there are many stresses on the marriage and sometimes this anger will lead to divorce.   The parents need to get past this anger while creating a strong support network.   If the parents stick together often times their bond will become stronger and the marriage will flourish.

Stage 3: Bargaining

The third stage involves the hope that the parents can somehow cure their child.  Usually, this involves prayer to a higher power, “Just let my child be like other children and I will do whatever you want”.  What the parents need to learn is the joys of being special.  Every child has unique abilities and skills.  Through therapies, practice and trial and error you will find what makes your child special.  My son has a bigger heart then anyone I have ever met and continues to amaze me with his generosity every day.

Stage 4:  Depression

During the fourth stage, the parents start to blame themselves.  They think they did something to cause their child to have a disability.  Instead of blaming the world and each other they blame themselves.  Trying to cheer someone up in this stage is very hard.  Common sense is thrown out the window.  The individual needs to realize on their own that they are not to blame.

Stage 5:  Acceptance

In this last stage, parents can start to dream again.  They buckle down and do the hard work it takes to raise a special needs child but now they also see the beauty in it.  They see their child as they are and not defined by their preconceived ideas.  This child has talents and abilities far beyond what they ever imagined.  While they might struggle at social interaction or sports they might flourish somewhere else.  My son’s brain works in pictures and has become my personal navigation system in the car.  He directs me through the city with an ease I still don’t have myself.  He also has become a great swimmer.  While he was not able to keep up in traditional team sports in the water he has the advantage.

Also, unlike many of life’s losses raising a child with special needs is an ongoing commitment.  It would not be unusual to run through these stages more than once as life happens!!  This doesn’t mean you are a horrible parent it means you are a human being.

If you agree or disagree with my opinion on the stages of grief in learning you have a special needs child I want to hear about it.  Please provide your comments below.

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9 Responses to “The Stages of Grief in Learning your Child has Special Needs”

  1. Doug,

    Thanks for sharing your thoughts. They are so valuable in helping those of us in the field understand the perspectives of the parents of a child with a disability. I plan to share this blog as well as your site with my student teachers.

    After reading your blog, I was reminded of a piece, Welcome to Holland, written by Emily Perl Kingsley, after the birth of her son, Jason. I am taking the liberty of attaching it here: http://www.our-kids.org/Archives/Holland.html . I hope that you enjoy it.

    Best,
    Gail

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  2. Thanks Gail. I have always loved that poem and you gave me a reason to read it again.

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  3. I did not believe it myself until some one brought it to my attention… then reading this I know its true.

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  4. Thank you for sharing this important information. I have one child with autism and one child with medical needs. Sometimes I still have difficulty being around people with with “typical” babies and toddlers who are basically calm and friendly (my kids were screamers, terrified of anyone who was not me, and even though they are much older now, they still have anxiety being around new people). I have spoken with a counselor about this, and I know that it is a normal process for me to work through my emotions, but I wonder if you have any information about this type of experience.

    BTW, I don’t live in Holland. I live on a completely different planet now – and the view of Earth from here is spectacular! LOL

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  5. While I appreciate that Kubler-Ross’s model of grief makes sense to some, it doesn’t work for me. I saw it being used by professionals (esp. those involved in making the diagnosis) as a way to be condescending and dismiss us as parents. My anger wasn’t necessarily part of the grief process, it was at the system that was supposed to help and was refusing to do so, even when there was a legal mandate.

    To be sure, there is an emotional process involved, and it’s not pretty or even pleasant. I found “Nobody’s Perfect”, a book by Nancy Miller, that describes the stages a little differently – Survivng, Searching, Settling In, and Separating. These stages made perfect sense to me and mirrored what my family was going through.

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  6. I completely agree that there is a similar “grieving” process when you find out you have a child with special needs.
    You have lost that dream and that child you envisioned having.

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  7. My daughter is 19 with multiple disabilities. We know this is true. All it takes is one mean person to start the whole process over again. When that person is a leader in the community and the school it seems the whole community will back him, right or wrong. There are monsters out there. Thank God we have only encountered one or two. In 13 years we have not encountered any meaness until this past few months. I feel it is my responsibiity to stop it since my child is non-verbal.

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  8. Can I present your article for possible use of your description of the grief cycle in our parent packet that we are developing for parents of students just coming into our program?

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The Stages of Grief in Learning your Child has Special Needs

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