A mom’s musing

When you are the mother of a special needs child, people tend to advise and question every decision you make about said child. The same is true for home school moms. 

So, imagine my life as I home school a special needs child. My reasons are many and multi-layered. 

Most people mean well  (and some are just bossy know-it-alls), but sometimes we need less criticism that is dressed up as advice and more encouragement and emotional support.  Most of all, we need your prayers and kind words.  

Parenting is a monumental task by itself, and not to be taken lightly. Having a daughter that will likely never be independent and watching her miss out on the usual girly stuff and friendships can be heartbreaking. No sleepovers. No boyfriends.  No driver’s license. All of that makes me sad. The worse part though, is watching her struggle with the simplest of things. 

Having said all that, I know God is still on His throne.  He has a purpose for her and is even now using these struggles for all of our good, even if we can’t see it yet. 

He will feed His flock like a shepherd;
He will gather the lambs with His arm,
And carry them in His bosom,
And gently lead those who are with young. Isaiah 40:11

It’s not a big deal for most families 

But for us to be able to go to the public pool and actually have fun with no incidents is such a huge blessing!  Furthermore,  I took both kids by myself.  

I seriously had thought our days of having fun as a family were over. …or at least on hold until Beauty got out of puberty.  

Today, though, we had a wonderful time together at the pool. Perhaps only parents of special needs kids can understand how overjoyed this makes me. 

‘Refused’

“Refused the flu shot” is what was written in large, bold letters at the top of my daughter’s (I call her Beauty) medical record the other day.

We’ve been taking her to Cincinnati’s Children Hospital for her check-up evaluations and screenings. When the nurse called us back, and before weighing her, she asked if Beauty had the flu shot. I said no. She asked, “Do you want us to give her one?”. I said, “Um, no thanks”. It was while the nurse was measuring Beauty’s height that I glimpsed at her file and saw the nurse’s note.

Perhaps I am knit-picking, and I admit I have little trust in the pediatric medical field (at least in what I have use of them for-which is not an actual illness), but this note really rubbed me the wrong way. Maybe it was where I was freshly aggravated at reading those stories of parents losing their children because a hospital accused them of medical negligence.

Beauty is 10 and has never had the flu shot and has never had the flu. Children we know get the shot every fall and they also get the flu before “flu season” is up. I never get the flu shot. Our son, 4, has never had it. Hubs just got one, but that is because he accepted a position at the hospital-sponsored health club and had to. We are physically healthy. Beauty was enrolled in public school for one entire school year plus two months of another. Our family was the sickest during those months than we have ever been, though not with anything serious. Since I brought her back home, we have not been sick once all winter.

Honestly, a small note saying something like, “Flu shot offered. Parent opted out”, would have be sufficient. The large, black handwriting at the top of the form, and underlined, hit a nerve. When you also home school a special needs child, one learns to be wary, even if you do everything properly.

Pray for my daughter

I want to ask my readers to please pray for my daughter.

She is ten years-old and struggles with cognitive delay, sensory processing, auditory processing and other “special needs”; in some ways she is very much a four-year-old.

Lately she has been saying things like, “Ask Jesus into my heart”. Every Christian parent wants to hear these words, but we are especially thrilled because I had prepared myself for the possibility she may never utter those words, because of her cognitive issues. I was never concerned about her salvation, because if she never mentally reaches the “age of accountability” or is incapable of understanding such things….she has an automatic ticket to Heaven, right?

Her words recently have touched me so.  I’ve spoken with her about sin and what Jesus did. She says, “(her name) doesn’t have to be nailed to a cross”. I say, “No, Jesus did it for us”. I am unsure how much she understands, about sin and needing to repent and the fact that trusting in Jesus as Savior and Lord…saves her from this thing called sin.

I am encouraged though. We have been told she is incapable of abstract thought and this is evidenced in that she never “gets” a joke and cannot answer a question that begins with “Why”. Perhaps she is simply repeating what she hears us say, what little bit she is able to process in Sunday school and church services. I do not know.

I do know, however, that she is cradled in Jesus’ arms and He is revealing Himself to her in ways He knows she can understand. Her trust in Him, as Protector, is growing. She asks me to “tell Jesus to keep coyotes out of my room”. We live in a rural area where coyotes live in the woods behind our house, literally within earshot. We are trying to teach her to ask Jesus for help when she feels “fussy”, episodes that are similar to an autistic child’s “meltdowns”.

So, dear readers, please pray for her to grow in her trust and love for Jesus. Pray for her as she struggles with being 10 in some ways and 4 or 5 in others. She wants so much to be independent, as most children her age do, and she cannot wait to drive a car. That is something I do not know she will ever do. She can drive a golf cart quite well, but I am not sure if she will ever pass the written exam necessary for a license. She reads at a kindergarten level. Whatever she can or cannot accomplish in the areas of independent living are below her relationship with Jesus, on our priority list. He has a plan for her, and I know He has extra special angels guarding her that see the Father’s face at all times.

I’ll close this post with my favorite verse:

He will feed His flock like a shepherd;
He will gather the lambs with His arm,
And carry them in His bosom,
And gently lead those who are with young. Isaiah 40:11

His promises are True.

Special Request: battles on the homefront

Not wanting to distract my fellow watchmen from their posts, I still would like to send out a special request of a personal nature.

I’d like to ask all my readers to remember my family in their prayers. My daughter, who you may recall has special needs, goes to the Cincinnati Children’s Hospital, Department of Development and Behavior tomorrow for some evaluations.  It is standard for cognitive and developmental evaluations to be performed at least every three years, but this is slightly different.  She has been exhibiting some rather unusual and disturbing behaviors lately that we need to get checked out.  We are hoping it is just an early puberty-hormonal thing (she’ll be 10 in November), but something tells me that is only an aggravant to a much deeper problem.

We are praying for the doctors and specialists to have the wisdom and knowledge to properly diagnose her so we may take the necessary steps to help her.  She already has a diagnosis of “Mental Retardation, Unspecified”; the Unspecified means they don’t know what could have caused the MR since there is no history of trauma and was a healthy pregnancy. Because of the MR, specialists have been hesitant to pinpoint more specific problems/conditions. I do not want a label, but I obviously want to know what we are dealing with and the best course of action.

So, please keep us in your prayers: the specialists, as well as myself and my husband that the Lord will give us wisdom and understanding concerning our little “Beauty”.

Thanks!

Marcia