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Parenting Children with Special Needs: The Ups and Downs of Advocacy

Alethea Mshar
Special needs mom and Blogger
03/29/18  3:24 PM PST
special needs parenting

Parenting Children with Special Needs: The Ups and Downs of Advocacy

Last night I struggled to sleep. During the day yesterday I confronted my son’s Community Mental Health case worker who, rather than going to bat for my son Ben, made excuses about why her coworker was failing to follow through on my son’s plan of service. I’ll spare you the details, but this interaction, which came up pretty much out of the blue, left me flustered to the point that sleep eluded me.

I consider myself an advocate. Ben has limited communication skills, so I speak up for his best interest. Though not assertive by nature, I have honed this skill and strive to understand what is best for my children and do what it takes to make it happen. However, I prefer to use this skill in a proactive fashion. I can prepare for an IEP meeting, or medical appointment with the best of them, and love coming to the table with my list of what is going right (along with accolades for those fulfilling their roles well) and suggested improvements. My goal is to ensure that the powers that be, whether teachers, doctors or mental health workers; are prepared to put my suggestions into place with a smile. It nearly always works.

It’s these unexpected confrontations that throw me. You might think I would have grown accustomed to them, since they happen regularly, but I just haven’t. I prefer to wrap my advocacy up all neat and tidy and put a bow on it, so that it’s well-received. I prefer to plan ahead, use positive language, and prepare, both mentally and physically.

Gosh, I hate it when these problems come up out of the blue and I have no choice but to jump in with an off-the-cuff response. I realize how important these relationships are, and I worry that my tone betrayed me, or that my words came in haste because I was reactive. At least I can rationalize that I didn’t go full out mama bear over the phone.

special needs parenting

Nobody and nothing prepares you for all the aspects of special needs parenting.

If there was a manual for Special Needs Parenting, I would wear out the chapter on handling unexpected problems, and probably still manage to walk away from them feeling icky and overthinking what I said.

Regardless of how well prepared I am and how hard I try to cover every base and consider every potential scenario, I get caught with my pants down. Maybe once this all plays out my perspective on the grand scheme will reassure me that my actions were justified…or maybe not.

I will commit to going forward in the best possible fashion, and acknowledge my humanness.

In the light of this morning, with a hefty cup of coffee, and a clear mind, I can give myself grace. I will commit to going forward in the best possible fashion, and acknowledge my humanness. Beating myself up for tense, but not inappropriate words will only wear me down further, and this battle has just begun. Rather than fussing about the past, I will prepare my next steps and plan the path to ensure that the best possible plan is in place to move forward. Nothing was ever accomplished by lingering on the past.

So pardon me while I get to planning, and focus on tomorrow instead of yesterday. I have work to do.

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