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The Messy Side of Raising a Child with Special Needs

Amy Long Carrera, MS, RD, CNSC, CWCMS
Registered Dietitian Nutritionist | Shield HealthCare
06/23/16  9:06 AM PST
Raising a Child with Special Needs Criar a un niño con necesidades especiales

Ask any parent. Raising a child with special needs makes organizing your life nearly impossible. Supermom Theresa Hornung provides her perspective – and some helpful resources – on the domestic and emotional chaos of raising twin boys with special needs.

Raising a Child with Special Needs

 

I grew up with seven siblings in a small house that always seemed full to bursting. It always looked and sounded as if a cyclone had just struck. No matter how much we cleaned, it seemed just a breath away from total chaos. It was always abuzz with drama and activity.

 

When I left that house and started my own life, I laughed to think I would never again have to deal with such chaos. While I would never characterize myself as a neat freak, I was certain I would be able to structure my environment in a much more organized way.

 

Nothing Prepares You

Six years ago after my amazing sons were born, I have to say, the chaos has won. The circus is alive and well. One might suppose that living in a family of ten would have prepared me for the parade of strangers that have come through my home. NOPE.

 

Don’t get me wrong, I am deeply thankful for every one of them. My autistic twin sons’ lives have been greatly improved by the efforts of these compassionate and hardworking therapists who get to see me in the very nadir of my domestic arrangements – I just drawled out that last bit in my best West Texas accent y’all!

 

Early on, my hopes were high. I was always a devotee of a well-applied face (I love makeup). I had performed in and managed complex theatrical endeavors. I can handle this!  There was no way I was going to be seen in less than my best form.  Ahhh… how I laugh now when I think back to those optimistic days.

 

The Source of Your Clutter Will Change

Ask any mom who has a kid with special needs where their personal appearance ranks in the hierarchy of things that need to get done… you might get quite a laugh, or just a derisive snort.

 

Before raising a child with special needs, the clutter in my home was the result of a busy social life, busy theater life, books, movies and my dearly missed crafting projects. The term “perfect storm” comes to mind now when I survey my home.

 

As the boys grew, so did their rosters of therapists and the paperwork, the outgrown clothes, the preschool artwork, the toys, the charts, and the CLUTTER. We started having bigger and more emotional things to deal with and not only did the time to clean disappear, so did my will to deal with it.

 

On top of this, the people who come through my house on a weekly basis has only increased. When it’s just your family, you can let your guard down, but with these patient professionals, while it may have no basis in reality, I just know that they shake their heads when they must navigate the chaos. These days, when I envision how I wish my house looked, it is not a scene from a housekeeping magazine but while there is still chaos, I have stopped the growth.

 

You Can Do This

I try not to be too hard on myself, but it is embarrassing. Please know that while I may have conceded the field, the battle is not over. I’m certain I will need just the right system and it will all fall in place. Well, the right system, not needing to sleep, and enough money to hire a squad of professionals to help me every day. That should get me over the top!

 

Contributed by Theresa Hornung

 

Helpful Resources for Raising a Child with Special Needs

Household Organization (Parenting Special Needs Magazine)

Great Kids

American Association of Adapted Sports Programs

Special Needs Now

USC Telehealth

Comments

4 Comments

  1. Tamisha Wooten
    Posted June 23, 2016 at 9:49 pm PDT

    thanks this was very helpful, just made me feel better about my Daily struggle

  2. Posted June 24, 2016 at 8:08 am PDT

    Glad this post could be of help, Tamisha! Thank you for your comment!

  3. Posted June 25, 2016 at 3:53 pm PDT

    Thank you so much for this post. It is quite hard raising a child on the Spectrum. Unfortunately, I do this alone since the death of my fiance’. I have no help not even therapists or family come to my home to lend a hand. It’s nice to “see” that I’m not the only one……. Thank you for sharing your story, you rock! Theresa Hornung

  4. Beth
    Posted June 26, 2016 at 12:10 am PDT

    Not to mention the extra messes that are made by a perpetual (7 year old) 2 year old. “Yes, sure, it’s cool when the water comes out of the dispenser on the fridge door, but honey, you need to use a cup. ” You clean up the messes that absolutely need to be cleaned up, and the other ones become part of the furniture

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