Thursday, September 22, 2016

Why it's Humanly Impossible to be the Parent of a Child with Special Needs

"See now that I myself am he!
There is no god besides me. 
I put to death and I bring to life, 
I have wounded and I will heal,
and no one can deliver out of my hand."
Deuteronomy 32:39, NIV

I can't do this.
I wish I could run away.
I am FAILING at this.
I give up.

I have thought these thoughts before, and perhaps I may again, and it's only through the grace of God that I can get up each morning and muster the energy to make the coffee, shower, smile and go bravely into a brand new day.

I do this for my daughter, my husband and my God.

I do this because I KNOW for a FACT that I AM A WINNER...and I'm ONLY a winner because Jesus Christ died for me and conquered the grave.

BUT WAIT!  Let's take a step back.
Why is my life so hard that I may have thought the thoughts that I listed above?
Because my daughter has special needs and there is a TREMENDOUS amount of stress placed on the parents of a child with special needs.  Not only is my daughter's disease RARE, which means we have to help educate and advocate throughout the medical community, but, in regards to her education, we have to be exceptional advocates for her as well!
But, Tammie, what kind of pressure is placed on you just because your daughter has special needs?  Isn't it possibly even EASIER because expectations for her future education may be lower?  
I just recently read a blog post (or two or three) about how to best prepare for your child's IEP (Individualized Education Plan).  Here are some of the things the authors suggested one SHOULD DO in order to be successful (all of these are in my paraphrase so are not word for word what the original authors wrote):


  • You have rights, so you "should call the shots"...you are entitled to this, that, and the other thing...so, you should demand that you be charge.
  • Ask Questions~understand the assessment data about your child and asks questions for clarification and perhaps even challenge the results given; ask for additional meetings or more time if necessary.
  • Come to the meeting Prepared~you should do your own research and be the most knowledgable person at the table regarding your child and special education in general.
  • Find an Expert~You should read blogs and articles and research that's all over the internet regarding special education, advocacy, self-determination, etc, etc, etc.
  • Bring someone with You who can act as an Advocate for your Child~(so, you should possibly pay someone to advocate in case you aren't doing a good enough job?)
  • Find Allies~You should figure out WHO on your IEP team agrees with your philosophy and goals for your child's education and rally those troops.
  • Bring it Back to Basics-you should set the highest expectations for your child's education so that your negotiations will get you maybe more than you expected.

THEN, the funniest thing was added into one of the lists:  "FORGIVE YOURSELF"
Forgive yourself and don't feel guilty about how you may not have done a "good enough" job??? 
Forgive yourself because you don't have enough time in each day to read every blog, every research article, every letter to the editor about special education and your child's needs???
Forgive yourself because you have a JOB, and a FAMILY, and a GOD who also deserve your attention???

Truly, when you look at these "suggestions," (and, I myself have learned things and gleaned good information from them every once in a while)...but, REALLY, when you look at all of these things WE are told to do for our CHILDREN...


HOW IS IT HUMANLY POSSIBLE???

Merriam-Webster includes as one of the definitions of religion:



I think we are setting ridiculous expectations for parents of children with special needs and we are creating a religion which draws these parents away from the one, true GOD.


Our children are not God.
Our schools are not God.
Our doctors are not God.
Our healthcare is not God.
Our politicians are not God.

Yet we suddenly need to spend every waking minute reading, learning, questioning, searching, and advocating or else we are letting our kids down by NOT building a successful IEP for them?
  • But God has commanded us to have no other gods besides Him!  (Exodus 20:3)
  • And God has said that HE is the one who helps us, and we can't look to others to prepare us. (Isaiah 45:5)
  • And Jesus has told us that He alone can save us...for eternity (John 14:6)
The minute that we lose sight of God's sovereignty over the lives of our children, we begin to believe that WE are in CONTROL and suddenly we are losing sleep (and possibly more) because all we can do is think about, read about, write about, talk about and plan for things for our child.
So, what do we do, Tammie?  How do we still do a good job parenting our child and advocating for her or him while also not losing sight of God?
We look to God and do what He would want us to do.
  • Pray Intentionally:  Only when we take the time to rest, be still, and talk to God are we THEN able to see HIS WILL for our child and determine what is important to HIM.  Pray for your child, the staff at the school, the district, your child's peers and friends, and the families in your community.  Can you imagine what IEPs would be like if they were covered in prayer by ALL FAMILIES for MONTHS leading up to them???
  • Remember the Kingdom:  We have already been told that God's Kingdom does not look like this earth.  So we need to remember that what THIS world tells us is good, or right...that's not ALWAYS the same for our eternal life.  
  • Read God's Word:  How can we say that God isn't speaking to us if we haven't opened up His book for us and read it?  We must be in the Word in order to keep our minds fixed on eternal things rather than the things of this earth which will pass away.
  • Give God the Glory:  Regardless of what comes to be, always remember that every good thing is from God.  We can do none of this apart from Him.
This doesn't mean we DON'T prepare, or we DON'T advocate...it means that our ADVOCACY is an intentional act of WORSHIP and we can only do this through the strength we get from our faith. 
It is HUMANLY IMPOSSIBLE to succeed at this special needs parenting journey WITHOUT the supernatural power of the Creator.  He has a specific purpose for us, for our children and for the heartache, blood, sweat and tears that go into our lives.  
We can only succeed when we fall to our knees and look to the one who has written these stories long before we were even formed.

Pray:  Heavenly Father, I submit my will to yours.  I ask you to reveal to me YOUR will for my child.  I ask you to strengthen me because the beginning of the school year is DRAINING.  I have tried to do this on my own.  I have tried to be a SUPER PARENT who knows all and achieves all for my kid.  But, only through you can we gain victory.  I will try to keep YOU as the one and only god in my life.  I will not worship the IEP because it will never be perfect and neither will those who implement it be perfect. Father, give me peace.  Set my eyes only on You and the things are right and true and eternal.  Amen.

~Tammie Hefty

6 comments:

  1. Love that opening verse. By God's grace, I'm sure parents can manage. :)

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    1. BINGO! :) Only with His strength. :)

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  2. This reminder couldn't have come at a better time for me. Thank you!

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    1. PTL! I'm so glad it encouraged you, Joanna!

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