My blogs on this site have run the gamete from telling you about new products to ideas for a good conference night. They have all come from the experiences that we have had related to raising our daughter, Elizabeth, who has special needs. Specifically, she has global dyspraxia and sensory processing disorder ( SPD). Being that she is 22 years old now, I know we have handled a great number of situations and emotions. Some with grace and other not so much.
But I would be so very remise if I did not share with you our one story from this holiday to simply let you know that even though she is 22 years old, we, too, find ourselves in situations that we find challenging. It is easy to share a story or experience from our past as we have had time to deal with it and learn from it but I really do not want to appear to anyone who takes the time to read my blogs here or elsewhere that we are “done” or that our days are always as smooth as can be.
We are a work in progress….
I say this because I know how it is to read posts from special needs parents and read all the wonderful things their child is doing and while I am so very happy for them, I start to feel a lot of things… like questioning if I should have done this or perhaps not done that for Elizabeth? Or, wondering if we are doing enough to help her with her independence currently.
In other words, I start to think and if I am being honest, doubt myself just a bit. So for those reading these blogs, know that I may have a few more years of experience behind me but know we are on this journey together. And I share things with you to help but to never be considered the expert. I am just a mom who really wants others to avoid the struggles I had trying to understand and raise a complex, beautiful child.
So let the story begins….. Let’s call it A Visit to a Christmas Store Gone Wrong.
My wonderful brother and his wife know of this Christmas store. It is one that is the largest one in our state and is open 365 days a year. It offers tours of the place because it has items in it from Christmas movies and the like. I did all the typical pre-place things I do for Elizabeth, such as talking it through, showing her YouTube videos of the place and talking right before we headed in.
The tour begins and Elizabeth does too but not in a good way.
The tour guide is happy, Elizabeth is not.
Her anxiety is starting because our waiting area is slightly dark ( She absolutely hates the dark!)
She is beginning to move a lot and asking if we are done here yet….and we hadn’t moved out of the holding room.
Did we abandon ship…no we did not.
We knew the next stop was outside, so I think we thought that would help her reset and enjoy the pretty decorations/music etc.
WRONG again…it was like now she knew where she really wanted to stay and did not want to go into the doors for the next part.
BUT WE PUSHED ON….oh, did I mention we drove 90 minutes to get here, made a reservation for the tour, involved my brother and his wife and had no plan B because we didn’t know area…
Room by room, the decorations were amazing! The lights flickered and Christmas music was wonderful….for us. For Elizabeth, not so much. With her sensory system firing, she would say that she did not want to walk through the squishy pillows to get to the huge tree or walk on the small bridge to get to the toys from the past room. Or round a corner to go to the next section.
Pretty much she said ” I don’t want to”
FOR EVERYTHING.
PRETTY BRIGHT ROOM
AFTER WELL LIT ROOM
We ended up with the tour guide showing us the way around all the fun stuff ( well fun for others) called the EXIT doors, and the way we could side step the short movie at the end because wouldn’t that be fun for her to actually have to be in a theatre as well.?
We side stepped a lot of things and she continued to say her above sentence..
Then the tour ended.
THE END.
We did not expect her to have this reaction as she told us it looked “really nice” when we showed her the videos. And she was excited to go with her aunt and uncle.
Did we handle it well?
I think yes and no. Maybe yes for the part when we helped her sidestep what we could. But maybe no, because we did encourage her to keep going when stopping looked pretty tantalizing.
We talked about this whole thing later in the day and that was a good thing. Also, good was the fact that the minute we left the building she was the one asking if we were getting coffee or ice cream.
So there it is in all its glory.
We too, are the journey with you….maybe a bit ahead….but still with you.
I wish everyone a peaceful week.
Michele Gianetti author of:
I Believe In You: A Mother and Daughter’s Special Journey
Emily’s Sister
Elizabeth Believes In Herself: The Special Journey Continues
Special Needs Essentials Blog 