Special Needs Parenting and Faith

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Today is one of those days I find myself getting frustrated, angry, and sad about the challenges my son with special needs faces on a daily basis. As I sit here even thinking about it, it almost feels like a double edged sword because on one hand my son has significant delays and hardships, yet on the other hand he is healthy. It makes me feel guilty for even complaining about the hard stuff when I know there are parents facing far worse circumstances than ours. At the same time I have to also remind myself that I am human and that the feelings I have are real and that I don’t have to have a child with life threatening circumstances to feel valid. My son has special needs and those needs are life altering.

Last week my son had an extensive speech and language evaluation due to his Speech Apraxia. You’re probably wondering what that is as many people have never heard of Apraxia. Apraxia is a rare, neurologically based, speech disorder that effects a childs ability to produce intelligible speech. There are different levels of severity ranging from mild-profound- my son’s case is more profound than most and he has been in speech therapy since he was 18 months old, he is now 8. Apraxia is also the most severe of all speech disorders in children. You can learn more about Apraxia by visiting http://www.apraxia-kids.org

In addition to the Apraxia diagnosis, my son also has significant developmental delays, motor dyspraxia, hypotonia, sensory processing disorder (SPD) and mixed expressive and receptive language disorder (MERLD).

Ok, getting back to that speech evaluation because that is what started me writing this piece and forced me to have a glass of wine (or two) in the first place.

No matter how many times I have been through these evaluations and KNOW what the outcome will be, seeing the numbers feels like a kick in the gut every single time! Reading test scores that show my son’s auditory comprehension and expressive communication is equal to a 3.5 year-old when he is 8, just hurts. He has been working SO hard in speech therapy since he was 3. Once again we are reminded (on paper) of how delayed he is and the light at the end of the tunnel is not even close.

It just took me into a downward spiral of sadness. Not for me, but for my little boy. I just want him to be able to learn like other kids his age and be at their level. I want him to have a thought and be able to say it clearly…to be understood! Man, it is so hard to watch your child struggle each and every day. The ability to communicate is something so many of us take for granted. Imagine not being able to share your thoughts? Your likes, dislikes, how your day went, or when someone or something has hurt you?

After reading my son’s evaluation report (all 10 pages) I started to zero in on those scores I mentioned above. I started comparing him to other children I know his age and even other children who are much younger and feeling sad that he is not a “typical” 8 year-old boy. Not a good place to allow your head to be…

Later that night my son grabbed his bedtime prayer book and turned to a page for me to read to him and this is what it said:

“you are one of a kind! In the world you won’t find, another someone like you. You can search high and low, go beyond a rainbow, but there’s no one who smiles like you. It is simple, you see, you are different than me. We’re unique in our own sort of way. The Shepherd chose you. You have something to do- and He’ll guide you along every day”.

I immediately began to cry, but with happy tears. My son chose this prayer and it was absolutely beautiful. It spoke to me, to my heart.

My little boy IS unique. He is perfect in every way! While he may not have the ability to communicate like others can (yet), he has the ability to show how caring he is, how compassionate he is, and how SMART he is. He knew I was sad that day, even though I tried my hardest not to show it, he saw me hurting and he found a way to make me feel better. Tests don’t come close to measuring any of those traits. Tests don’t measure how BIG his hugs are or how they instantly make me smile. Tests don’t measure how concerned he was at the playground the other day when a little girl fell and he ran over to help her. Tests don’t see the smile on his face when he hears our song that we always dance to and grabs my hand for me to pick him up while we dance with him in my arms and his head on my chest. You can’t measure these things because they are immeasurable.

By the end of that night, I was given such a special gift from my son. He reminded me that he is “one-of- a- kind” and he restored my faith that he will be just fine.

 

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3 thoughts on “Special Needs Parenting and Faith

  1. thank you for sharing this! i learned two things today from my wordpress reader 1. gratitude makes so much different and is so healing, isn’t knowing your son is one of a kind so healing to you, and also knowing that despite those challenges he has help, people helping him, and you loving him isn’t knowing he is loved healing?, and also the health he has despite the other challenges! the list could go on and being thankful for those things could be a thing to hold on during difficult days, another thing is considering all these circumstances as a teacher, that teaches you gratitude, that teaches you loving harder, and understanding, a deeper understanding even when he cant properly express things you still understand him! am sending you strength x

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  2. This is beautiful! You are so right test scores to not define the beauty of who your child is within! We may need them to get services or to have a baseline of information, but they are not who he is! I have come to learn through my own experience with my daughter that the feelings you are having are very real and justified even if there are others worse off. If you did not have them, then I would worry that something was amiss with you. My daughters disabilities are invisible, yet severe. Her road has been long and the journey for her and my family has not been easy. I thought that having an invisible disability would work in her favor. When I would see many disabled children with visible disabilities, some in wheelchairs, some physically crippled, someone always worse off than her I too felt guilty for my feelings. However over the years I came to find that the invisibleness has worked very much against her, not that I would want for her to be in a wheelchair, or more severe, but know invisible disabilities bring their own set of very serious issues, as people don’t see that you have a problem, and therefore do not help you but rather hurt you. Many don’t understand or get it!
    In any event, don’t feel guilty for hurting, it is the love you have for your son. Try to find your sons passion, as he grows, find out what he loves, and run with him with it!
    Continue to write it is healthy for you and helpful to others

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  3. You are SO right! Your son is one-of-a-kind and precious! Numbers on a page do not begin to capture the wonderful ness of him. Thanks for sharing this insight!

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