Tuesday, December 25, 2012

Special needs disability parenting BLOOM: The 'perfect' holiday ...

By Lori Beesley
Holland Bloorview family leader

At this time of the year, other children are putting pencils and crayons to paper, writing their letters to Santa. Our son is getting excited about Christmas too, but he has his own reasons. For Mitchell, it?s all about the anticipation of the day rather than the reality.

Mitchell has a genetic condition called Fragile X syndrome as well as autism. Because he has Fragile X, he is developmentally delayed and is unable to write a letter to Santa, or anyone else. So why is he excited about Christmas?

The idea of having everyone in the family over for the day makes him happy. As soon as the lights and decorations start to appear, Mitchell knows Christmas is coming. He?ll pretend to call family members on the phone, inviting them to come over for Christmas and spend the day together.

The other night I?told him that my brother was sleeping over on Christmas Eve. He was?very excited. He immediately picked up the phone and had a good five-minute 'pretend' conversation with his Uncle Terry, telling him to make sure he brings his toothbrush and pajamas when he packs for Christmas Eve. There was no mention of gifts or presents, since those are secondary for Mitchell. The joy of spending time with the people closest to him is what makes Mitchell?s day special.

That said, Christmas time can pose its own unique challenges for us as a family. Mitchell can become overwhelmed if visitors to our home aren?t those he was hoping for, or if there are too many.

We recently hosted five couples for dinner and minutes before they arrived, Mitchell got very upset, leaned his back against our locked front door and kept repeating: ?No one in my house.? He recently turned 18 and is taller and stronger than me, so simply picking him up and removing him is no longer an option. Lots of distractions and a promise of a special treat of watching TV in Mom and Dad?s room helped resolve the situation.

Going to other peoples? homes usually proves more successful, but we need to do lots of prep work to make this pleasurable for everyone. We prepare?Mitchell by telling him what to expect and who will be there. We bring along his Nintendo DS and our iPad and make sure both are fully charged. Within minutes of arriving, Mitchell has usually scouted out a quiet room or corner and stays put for the remainder of the visit. At some point, his internal ?It?s time to go home NOW? switch is thrown and we need to be ready to?move pronto. On a positive note, his ability to tolerate longer evenings out has?increased over the years so there is hope!

Another issue we face is managing our family?s expectations of the holidays. It?s our job as parents to try to make sure our children enjoy this special time of year. But to do that,?we need to know what a great time looks like for our particular child, given their unique abilities and sensitivities, and balance that with?our family?s expectations.

Years ago, we used to celebrate Christmas at my brother-in-law?s home. It was a loud,?boisterous home with everyone talking over each other. It was the exact opposite of the environment Mitchell was most happy and comfortable in. When it came time to open gifts, my sister-in-law wanted everyone to be in the same room, taking turns, eating and laughing together.

But I knew better.

I quietly?led Mitchell into another room, popped in a new movie he had received that morning at home (a yearly tradition) and set him up with a snack and drink. He was in his element and had a grin from ear to ear. My sister-in-law however, was not happy.

She was upset that her idea of the perfect family opening gifts together wasn't?happening.

?But we should all be together," she said. ?That?s the way it?s supposed to be.? She felt badly that Michell was all alone. Mitchell must be with us, she insisted. I had to tell her, in no uncertain terms, that Mitchell was not joining us. It was frustrating to?have to explain to?her why Mitchell was happier alone in a quiet room, watching his movie, and to convince her that this really was best for Mitchell and for everyone. However, as educating extended family is an annual?occurrence,?it does get easier as the years go by.

While your?family may or may not get why?you set things up?at celebrations the way you?do, you know what?s best to ensure your kids are happy and safe. And along the way, maybe we can all?start a new tradition or two!

Source: http://bloom-parentingkidswithdisabilities.blogspot.com/2012/12/the-perfect-holiday-make-it-your-family.html

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