Archives for the month of: July, 2022

So as we all read in the last blog, Elizabeth’s emotions have been running on high lately.

And guess what?

We had a vacation scheduled. We are thinking VACATION with an exclamation mark after it. She is thinking vacation with a big question mark by it.

We went away for the week, last week.

It was up to the lake, which is about an hour or so drive. We rented a house right on the lake that promised beautiful sunsets, which it certainly delivered

The easy part was clothes packing because it was hot, and we had a washer and dryer. So shorts and T-shirts which Elizabeth pretty much did on her own.

The harder part was the other stuff packing because this is the stuff we take to help her be okay in a new room, bed, shower etc.

In other words all the things that make this new place “just like home”

And this is directly related to her special needs, specifically, I feel to her SPD ( Sensory Processing Disorder) For those who don’t already know, my daughter, Elizabeth has SPD and global dyspraxia. Both both disorders affect her throughout each day. Sometimes it is clearly one more so than the other.

Elizabeth and I packed her blue light bulb (she likes to have her room turn a soft blue all night), her 2 lanterns( to light up the corners of her room) Her linen spray (to help her relax) Her therapy music ( to help her emotions) and her paints ( to relax on the deck). I’m sure there are more things but let that suffice for now.

I feel a certain amount of both stress and almost sheer dread when it is time to pack because for over 24 years any and all trips we took would require such detailed packing. Sometimes with lists that were so long and with items that you could not just grab at an errant Walmart if you forgot them.

I will say it is much, much better now for sure. But there are still items and considerations that simply still have to be made.

But for this trip, it was her SPD that showed itself. I think because she went into the trip with her emotions going this way and that, that her emotional reserves were not replenished enough.

In any event, we were on our way on Tuesday!

We arrived and had a fun lunch, sat by the lake, did some fun shopping and all was great. We went to the house to get settled and found a PORCH SWING! If anyone knows my Elizabeth, they know just how much she LOVES swinging! So, woo-hoo, off to the swing she goes, and she has the amazing view of the lake to swing to!

Then soon it was time for a dinner and to bed.

Let me tell you this, setting up the first night’s sleep stuff takes TIME! But once done, I thought she might sleep well.

I was incorrect. I think it had to do with the room having an in the window air conditioner unit. It was a bit loud and add that into the mix and you can see how that could create an issue.

She did not and she was tired but a trooper.

We had a great day the next day though. We did our 4 mile walk, went to the beach, lunch and had a ball!

I thought for sure she would sleep.

I was incorrect again.

And this is where the vacation started to slide sideways.

I have learned over the years, just how vital sleep is to her emotions and ability to handle things. So with 2 fair nights of sleep, she was pretty prickly. That is the word I use to describe her when she is J_U_S_T holding on and anything you ask of her, is challenging. ANYTHING!

We did our days and she hung in like a trooper but it was with us building in rest times, sensory breaks and the like.

I would say that the vacation was a good, fun and relaxing one (more so for those of us that slept) and I will also say that she was the first one to happily announce on our last morning that “today is the day we GET to head home!” While all the rest of us are wanting one more day, she is practically packed and waiting by the door.

She got home, went to her room and flopped on her bed. She made sure to tell me just how much she missed her room!

I am proud of her for all she is, the work she has done in her life and I simply love her so much.

Also, she was asleep that night by 8:15.

I wish everyone a peaceful week.

Michele Gianetti author of I Believe In You

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I think one harded things I have both learned and had to accept on this journey with Elizabeth is that her disorders will NEVER go away.

EVER

They may fade into the backround and maybe hardly be seen sometimes. But they will never be gone.

I think that we know our children with special needs, how they work, what they like, love or hate.

It helps us to do our best for them, to help others understand them and how they “work”

This helps us teach those who work with them because once our children are understood, they real good stuff comes.

But the one thing that I had to learn years ago is that no matter how much work we do or how calm she seems at any one time, her disorders will always be a part of her. For those who don’t know, my daughter, Elizabeth has SPD (Sensory Processing Disorder) and Global Dyspraxia.

And with these disorders comes a certain given amount of anxiety.

Sometimes the anxiety comes from the anticipation of a new thing (SPD) How will I manage it?(SPD) How will I do the things this involves (dyspraxia)

And sometimes it comes as a result of changes or stress. How can I handle all that is going on? (SPD) How can I deal with these emotions?( SPD/Dyspraxia)

So truth be told, we have had a great number of stressors in our home this month. From COVID, to an ill family member (my mom) to planning for, and dealing with Elizabeth’s beloved sister moving to Colorado to finish her residency. Add in the fact that June’s schedule had no real pattern ( vacations for friends/work schedule changes/COVID for friends)

And you have a real potpourri of reasons that we started to hear some humming from Elizabeth. That is the sign that internally, she is struggling. I can see that she looks a bit more disorganized as she is going about her life and we have talked about it. But not the WHY, more like the HOW CAN I HELP YOU WITH THAT TASK.

Now the humming. Which we have not had as part of her for a LONG, LONG time.

Hence the thinking about her system and that those disorders have moved from the recesses of her to the forefront!

So last night we had a girls night and during that night, we talked….

She cried for her sister.

She cried for the changes that make her heart sad.

She cried because ” I have to be happy again’

We talked more.

She is so amazing and in touch with her feelings and emotions.

Life comes at all of us and we can all be sent reeling with it but for those with special needs, it is just that much harder.

I am guessing we have some more work and talking to do to help her come down from the month we have had. After all, we all need support and help from others.

I just went upstairs to offer her some therapy music to help her system calm a bit.

I wish everyone a peace week.

Michele Gianetti author of Elizabeth Believes In Herself

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