Being a special needs mom is hard....a vent



Well, in my last post I mentioned that we are at the beach for a week get away. In my mind, when looking forward to getting away to the beach I envision sitting on the beach, watching the ocean, reading a book, relaxing, hearing from God....peace.....quiet...

What reality is......my oldest son, with dyspraxia, ADHD, tourettes talking very loudly, all the time, very enthusiastically, various tic's going off at different times, constantly wanting to go somewhere! My daughter with dyspraxia, spd, ADHD struggling to manage being in a new environment. Not able to sleep the first night, up at 4 am. Crying on the beach because the water is too cold, the sand feels great for awhile, until it is just  too much.

Wanting to go to the gift shops and stroll through looking at cute items, picking up a few souvenirs.

What reality is.....frustration when my daughter can't find what she wants, tears when I remind her not to spend all of her money, inability to make up her mind, more tears....LOUD tears when she can't make up her mind.

Looking forward to a fun day going to an aquarium, then maybe to a beach, or out to lunch.

Reality is.....Trip to the aquarium pretty much overwhelmed my daughter with all of the sensory input, resulting in a very tearful struggle to the gift shop again and a meltdown as were were leaving. Had to go immediately back to the hotel for lunch and quiet time before we can even think about doing anything else!

Don't get me wrong, I love my children. I really do. It just becomes exhausting having to walk on tip toes everywhere we go not knowing when the next meltdown will happen. Not being able to make plans, NEVER having any QUIET!
We have had many fun times interspersed amid the chaos. Times of awe as they touched the star fish. Fun conversations in the car about the ocean and sea life. Fun dinner together, eating chinese takeout in the hotel.

It's just getting used to the chaos and having to be prepared at all times for possible meltdowns. Always having to have a contingency plan. Always have to pre plan carefully ....... is exhausting!

Just surfing the web and I found this amazing article!
 http://www.keyministry.org/specialneedsparenting/2017/8/4/waiting-for-beautiful-how-to-make-peace-with-gods-agenda-when-it-hurts

It really gave me hope and a new perspective. =)

1 comments:

  1. Julie, I totally get it. Oh, how many prayers I cry in my bed after walking away just for a moment's break. And most people don't understand. Although my first born has not been officially diagnosed (working on it), all the adults in his life keep telling us to "try this" or "do that". I just want to say, "I have no energy left." ...but God. God gave us our kiddos for His good purpose (I think many times for my sanctification). May He strengthen both of us today to love well.

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