The Choice We Make As Parents Of Children With Special Needs

“We want him to learn to be social, but not too social.”

“Parents must be involved, but not too involved.”

“He needs to you to accommodate his needs, but not enable him.”

“We want him to make friends, but we don’t want the other kids to feel bad that he has a friend and they don’t.”

“It is essential that you get involved and stay close to the situation. But also realize, you might just be too close to the situation to have perspective.”

“He is doing so well, but behavior can always change so it is essential to continue to treatment for things that are no longer issues.”

“Every child is unique, but we need to make sure he’s fitting in to the expectations for his age level.”

“You know your kid best, but we are the experts.”

Special Needs Parenting is confusing, at best!

All of these statements were made to me at one time or another, for one of my boys or another.

All of these statements furthered my confusion and concern as a mom of children with special needs.

Am I doing enough for them?

Am I doing too much for them?

It seems that before I can even answer these questions for myself, I often have two or three other experts making the decision for me.

The reality of parenting a child who is not progressing “normally” almost always involves well-meaning doctors, therapists, educators and social workers, frequently giving advice and direction that conflicts with one another.  Or even with themselves.

It can be so confusing.

And overwhelming.

And defeating.

Special Needs Parenting is confusing, at best!

More than once this past week, as my youngest son continued to undergo evaluation after evaluation to determine how best to help him, I found myself thinking, “This is all crazy. We need to go live off the land and pretend like we’ve never even heard the word diagnosis.”

It’s the catch-22 of special needs parenting. Our children require certain supports that make life more functional and doable. But in order to get them, we have to wade through a series of opinions, recommendations and all out assessments of our kids’ abilities and often, our parenting.

Today, I am so tired of it.

I want to tear up the testing packet. I am tired of penciling in the scantron bubble for never, sometimes, often or always on behavioral assessments.

I want to shrug my shoulders when the next therapist asks me what progress we saw over the weekend.

I want to take the doctor’s notepad, where he is writing down the same exact thing he made a note of in our last visit, and throw it out the window.

I want to gather my son up in my arms and drive him to the ocean. He can play in the waves and look for shells, while I breathe in the fresh sea air.

But I won’t do it…any of it.

I can daydream all I want, but the truth is, I know better.

I’ve been doing this long enough to know that eventually, all the test answers, doctors’ notes, therapies and appointments begin to pay off. Not only for my son, but for me.

The appointments become less and less frequent.

The skills become more fluid.

The confusion I feel will slowly turn into confidence.

Special Needs Parenting is confusing, at best!

And so, for today, I choose to rest in this – I am my boys’ momma. I am the only one qualified for the job.

I will do everything in my power to do it well. Sometimes this means involving others and getting help.

Sometimes it means playing in the waves and reveling in salty air.

But the choice as to how we proceed is always, always mine to make.

6 thoughts on “The Choice We Make As Parents Of Children With Special Needs

  1. You are doing wonderfully well as those boys mother. I know God is with us in this journey, but I am also grateful for other Moms who help me not feel so alone. I hate those evaluations & dread filling them out. You are right, there is a purpose, but some days I am just tired. Thank you for sharing your gift of so perfectly putting into words much of what I feel. It is a great blessing to be a mother to children with special needs. I have learned & expanded in so many ways I would never change. On those days that are rough, I’m glad to have resources like this. I pray you can find the answers you need to help that sweet son of yours! I’m sure you will!

  2. YES, YES, YES, to every single word of this!!!! Thank you for sharing your heart and encouraging others who are walking this road! Prayers of strength for you today…and coffee and chocolate, lots of that too!!!!!! Hugs!

  3. It’s a wild ride, isn’t it? Thanks for sharing so beautifully and making this corner a little less lonely. Sometimes it takes me more than a day to swing back to hope, strength, gratitude… After 14 years, I’ve learned it’s okay not to tie up each experience with a bow of learned truth. Sigh. And, yes, I want to send the inevitable forms through the paper shredder. Twice. No, my child cannot count change or open a can, for the 100th time–no! Where is the write-in space on this forms? Because my Sadie can: sing all the Disney princess songs word for word, give back rubs, make me laugh until I almost pee my pants. So there, Scantron! Back in school, I always did prefer essay tests to multiple choice…

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