Sunday, June 9, 2013

You Are Not Alone, an Open Letter to New Special Needs Parents



Life has just thrown you a curveball. You probably weren't expecting it, and you might feel like you have taken a hit full in the face, or the gut. You probably feel stunned. Maybe you feel like you can't catch your breath. You are not alone.
 
Your plans and expectations for the future need painful revision. You have no idea what to do now. Everything seems overwhelming, and you don't know where to turn. You are not alone.
 
You don't feel ready for this. You question your ability to handle it. Somewhere, deep down inside, you harbor a fear. You question yourself, "Can I be the kind of parent my child needs?" You are not alone.
 
You can't yet imagine adjusting to this "new normal". What does this mean for your future, and your child's? You worry about what your child's life will look like. The unknown looms large before you. You are not alone.
 
You might discover that your family and friends find it difficult to relate to you. Your challenges, struggles, and fears may be hard for them to fathom, even if they are trying. They may have trouble understanding what you are dealing with, and what lies ahead of you. They may unknowingly say all the wrong things. You might find that your old friends simply no longer fit. You may feel lonely and isolated. You are not alone.
 
It will take some time before you feel like you have your feet back under you. I won't lie to you, the rough patches will suck, but they will also be times of great personal growth. If you never had much faith, you may be driven to seek it now. If you already had faith, it may be shaken. You may question everything you ever thought you knew about God, and how the world works. You are not alone.
 
The days, months, and years ahead will be challenging. Please know, almost no one feels prepared for this. Rest assured, you will grow into the role that has been thrust upon you. You will become the parent your child needs. You can do this. You are not alone.

Most special needs parents will experience fair amount of grief, both in the beginning, and sporadically throughout the years. Grieving the loss of "normal" does not mean you do not love and accept your child as they are.  It does not mean you are an awful parent. It means you are human, and that you have lost something significant. It means that you are trying to come to terms with the gap between what is, and what you wished for. You may find over the years that certain things will trigger a wave of grief. It may happen when something brings in to sharp focus the difference between your child and their "typically developing" peers. It may happen when you witness others treating your child differently. Grieving over these things is not abnormal. You are not alone.
 
You will need support, so the first step on this new journey should be toward that support. Set aside any shyness, or stoic pride you may have, and make a conscientious effort to make connections with others who share a similar journey. Understand that support groups are like people; they each have their own personality. Keep looking until you find one that fits you. There are lots of people in those groups who have already been where you are. They know things you need to know. They will understand your fears, and your struggles. They can help you. You will see that you are in good company, that your feelings and experiences are not abnormal. Your situation just happens to fall outside of most people's life experience. You will begin to understand what I mean when I say, "Together we are stronger." Connect with other special needs parents, and you will see it is true; you are not alone. 
 
In time, those sharp edges of newness will wear down. You will see past the labels, and the challenges, and find yourself marveling at the at the miracle that is your child. You will know your child is much more than the sum of his/her issues. Your child will teach you lessons in patience, persistence, and faith. You will find amazing blessings among the thorns. You will meet awe inspiring people along the way. Soon, you will discover you have developed your own wisdom to share. You will find yourself reaching out and helping others. You will become the life line you know they need, because you have been there yourself. When that happens, you will find yourself also telling new special needs parents that they are not alone. ;)
 
My youngest miracle. Sometimes I look at her
 and I think my heart could just burst with love and pride.
 
 
By Kristina Smith Blizzard
 
To the special needs parents who read this, I would like to invite you to join my Facebook support group for special needs parents:

"Loving a Miracle - Special Parents Supporting Each Other."
This is the original support group, and all content is open to the general public.
https://www.facebook.com/#!/groups/lovingamiracleismoving/

There is a closed group, for those of you who would like to post things outside of the view of the general public:
"Loving a Miracle - The Special Parent's Safe Zone."
https://www.facebook.com/#!/groups/lovingamiraclethesafezone/

There is also a public PAGE. This is where I post information and links that I think are helpful to special needs parents.
https://www.facebook.com/lovingamiracle

Permission to repost/reprint: If you would like to obtain permission to repost or reprint this post, please send me an email to kristinablizzard@yahoo.com. Thank you.

6 comments:

  1. I am not a new special needs parent but I needed to read this. I tried to join the FB group where you post information and links but the page wouldn't load. I think there might be a break in the link.

    Thank you for writing this.

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    1. Hi, Shari. Thanks for the heads up on the link. I think I fixed the link to the Loving a Miracle Page. Let me know if it still fails!

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  2. My son was born a micro-preemie and overcame his developmental delays and is now in the 85th percentile as a 3-year-old. We've just recently started a new journey as he has an IEP with mild speech delays and behavioral issues (inattentiveness, hyperactivity and a very strong will) that has brought us back to the beginning of a new path. This is an exceptional piece that speaks to me in this season of my life as we start a new journey. Thank you.

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    Replies
    1. You are quite welcome. The journey we are on is a long one, and is best taken with others who "get it". :) The best, most helpful information I have ever received as a special needs parent, I received from other special needs parents, not through any official channel.

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  3. I love your blog & Morgan is gorgeous!

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