A Mother’s Perspective- An honest discussion about parenting a differently abled child

One of our Playhouse moms, Jennifer, recently wrote this social media post and we thought it’s an important perspective for everyone to hear about.
Guest Blog by Jennifer: 

 

Vulnerability alert (and a long post)

 

Being the mom of a differently abled child is exhausting at times. I don’t mean physically exhausting (although there’s definitely that), it’s emotionally exhausting at times.

There are the things that you mentally prepare for, an IEP meeting, an appointment with a specialist, the heartbreak of losing another cherished caregiver. You rally, you research, you plan for a favorite beverage, you talk to other parents, do your research, and sometimes plan a little transition or celebratory dinner or treat as a reward for the tough things.

I am in the middle of a review/revise IEP that is 47 pages long. I’ve reviewed it but am pausing before I send my final comments.

I am also in the middle of finding new providers for Noah as he is aging out of Caravel in less than 30 days. That has been quite a challenge.

 

  • Provider A doesn’t take xyz funding source
  • Provider B doesn’t start until age 16
  • Provider six trillion (option z) has a long wait list…..

hours and hours of emails and phone calls……. all striking out.

Thankfully, I think we may have found something that will work and I’m confident that the chips will land in all the right places for Noah. Still a lot of moving pieces though.

Then there are the out of nowhere, unexpected phone calls that you weren’t prepared for…… A call from someone who has likely never even met your son, or understands the nature of the request made on behalf of your son. A call that quickly and coldly tells you your son cannot participate in a much desired extra curricular activity. A call that takes you so by surprise that even though you know the name of the caller, you ask the caller to state their name at the end of the call so you can write it down because now you are eclipsed in a fog of emotions.

Yeah that happened at 2:44 today, in the middle of my workday, when I least expected it. I cried, called my mom, texted some trusted Holland mamas and then sent the organization an email letting them know I was hurt and disappointed and asked for help in exploring different options.

I am thankful that, emotionally, I pivoted quickly. But these are the lingering thoughts that remain……
  • This isn’t right!
  • Why is everything always a fight?
  • When will our society get it?
And, my sweet boy, all I want for him is to be included.

“I wouldn’t change you my sweet boy for the world but I will advocate until my dying breath to change the world for you!”

Noah Ray, I have said it before, you, my precious first born son are worth every tear, every text, every phone call, every minute spent reading and researching. I wouldn’t change you my sweet boy for the world but I will advocate until my dying breath to change the world for you!

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