Family reunions are supposed to be fun, enjoyable, and refreshing. Yet for me, family reunions have been a time of heartache and tears. Not because we have a problematic family, but because my daughter with Down syndrome also has sensory processing disorder (SPD).
These family gatherings are too much, too loud, too fast, too big. She ran away from her family, hiding in our room. When we insisted she spend time around her grandparents, aunts, uncles, cousins, she panicked, held tight to our necks, buried her face on our shoulders and fell asleep in order to cope – or rather escape – an overwhelming situation.
And every year, I walked away feeling like nobody knew my child. And they didn’t, how could they? How could they know the little girl that celebrates life when all they see is a scared child who locks herself in her room and interacts only with her iPad? How could they know the joy? How could they know her laughter? How could they know her?
And my heart broke into a million tiny pieces. The tears came and they came fast. How could our family understand the great joy we live with when all they see is a child that shuts the world out?
It hurts.
Last year in Kindergarten, Nichole’s occupational therapist (OT) suggested we do official testing for Nichole’s SPD. Part of the testing involved a questionnaire. In explaining what I saw in how my daughter experiences the world around her I wrote, “My family does not know my daughter.”
I really don’t care so much that it is hard for Nichole to go to a restaurant because the noise is overwhelming. I doesn’t bother me that she is unable to watch a movie in a movie theater. I am okay with her changing her clothes five times a day because nothing feels right. I can deal with that. But when her senses prevent her from enjoying her family, and her family doesn’t know the love she gives or the personality she has, well…it breaks me.
Amazing how a question on a piece of paper can knock you down.
Last year, with the help of her OT and her teachers, we worked really hard on her SPD. We found out that wearing noise reduction headphones really works. That taking breaks from activities prevents those from becoming too overwhelming. That going into a quiet room (or the therapy room) feels like happiness.
Thankfully, her teachers did not mind changing her clothes if necessary. Whether it was because it did not feel right, or because a shirt got wet, even just a little bit wet.
And so this year as we drove the long drive to the Stumbo family reunion, we hoped that things would be better. We hoped that we could help our daughter a little better. We hoped that our family would get a little taste of how amazing our daughter is.
Nichole walked right in, she hugged everyone and said “Hi.” The cousins ran and stampeded through noisy halls, and she tagged along and ran with them. She squealed with them. She laughed out loud. She crawled on her grandpa’s lap and her grandma’s lap, and her uncle’s lap. She hugged some more, she kissed and loved on anyone that would let her.
And the noise cancelling headphones stayed packed away in our bags. They never came out.
And she was too busy playing to change her clothes.
And she talked and told stories (that nobody could understand because her speech is hard to decipher), and she danced, and she watched a movie with her cousins on a big projector with the lights down, and she made sand castles, and she rode a boat.
In the past she ran away from her cousins, now, she loved the closeness, even the screams of play and she joined in!
And for the first time in six years she was truly herself.
My family knows my child.
And I come back home and the tears won’t stop. But this time I cry because my heart is full. Oh so full! I could burst with happiness, thankfulness, and pride!
It was a great summer vacation!
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What a wonderful time of blessing! Your pictures brought tears to my eyes!
Ellen, what do you think was the turning point with Nichole? My daughter sounds very similar. She has Down syndrome and is on the autism spectrum. It sounds like there were a number of interventions used during the year, but then you didn’t have to use any of them at the gathering which is amazing! I’m just trying to figure out what worked and why. I’m always searching for answers to help my kiddo. I love your blog. I love your family. 🙂
Tracy, I am not sure that I could pin point what made such a big difference. but I can tell you a couple of things that are different. 1) She is in school full time. 2) School really targeted her SPD this year and they were able to figure out what works what doesn’t work. 3) We found out she has a gluten sensitivity and even her behaviors at school drastically changed around that time, we can definitely pin-point to her diet change as a time that brought along many changes. 4) She decided she did not want to miss out on the fun?
Thank you so much for your reply. I’m going to see about focusing on my daughter’s sensory issues more intently this school year and see what we can do! 🙂
Amazing! I, too, have tears for the joy of it. It is incredible what happens when a child finally feels understood. Then they can be brave knowing that you know and will be there if needed. Wow! Mostly speechless. Amazing!
I’m so happy for Nicole and you that she was able to have a wonderful vacation!!
Just makes your heart sing to watch others (especially family) get to know the blessing of your child too. I know that too!
It does, and , I miss you!
You are so blessed to have such a loving and close-knit family! It really is something not to take for granted. It’s wonderful that your daughter is able to participate and interact with everyone now. My son has autism and he has also made great strides in his ability to stand noise and being around people. Unfortunately, family reunions are not a reality for us. My parents did not get along with their siblings so I am not close to any of my cousins and I have no siblings of my own. My hubby’s family is close, but they live on the other side of the planet and we cannot afford to fly there or take the time off needed to go. I feel my children are missing out, but it is what it is. We all do the best we can with what we have been given.
Yes Vonnie. My husband’s family (his parents and siblings) are scattered from coast to coast in the US. These family reunions happen once a year, so they see Nichole only during those reunions.
It is so exciting when these break-throughs happen. We had the screaming in public restrooms any time someone flushed a toilet. Oh, the movie theater!!! It took a few years to get to the point where she would sit through a (unnecessarily loud) movie! We were finally able to sit through shows and the fireworks at Disney this past year, when she was 12.
Anna I hope someday we can all go watch a movie as a family!