Today we are delighted to share Kerri’s thoughts on holiday gifts for children with special needs. Kerri Ames is the mom of two beautiful children, one with PACS1, a rare genetic syndrome that causes intellectual disabilities. She writes about how living with a child who has special needs changes a family, in the good way. You can learn more about Bridget and her family’s journey at Undiagnosed but Okay.

“Holidays are supposed to be fun for kids, right? They are supposed to be excited to see Santa, anxiously waiting for the Menorah, running down that precious morning to see all their relatives and the gifts they will bring them.

Except with Bridget it is not that magical experience, quite frankly it is torture.

Santa sends Bridget into a full-flown panic attack. Seriously, she walks up to the Santa figurine in the living room and will tell him ALL DONE ISMAS. Abby wonders each Christmas how Bridget gets on his “nice” list. For years we had issues with presents. Our friends and family mean well, they are beyond generous and seriously want to spoil Bridget.

Except you cannot spoil the girl who doesn’t know how to play with the Baby doll, all that happens is you depress the mom knowing she is going to have to donate that baby doll to a shelter. Because it breaks the mom’s heart seeing the doll collecting dust in the corner. Because the mom feels heartbroken that her little girl doesn’t know how to play, but knows another child is going without. The mom also doesn’t want to appear ungrateful. She knows the thoughts that went into the purchasing the gift. She will gracefully accept that doll, knowing full well she has next year’s Toys for Tots donation covered.

It does not help that Bridget’s birthday is so close to Christmas. I would just get over the birthday disappointment and BAM here comes Jolly St. Nick down the chimney!

A few years (and many tears) ago, this mom got proactive. I could not face one more birthday or holiday opening up presents for Bridget knowing that they would never be enjoyed. Instead about a month before Bridget’s birthday I sent the following e-mail:

Hi Everyone

Okay, I am going to admit feeling like a jerk for this e-mail 🙂

I know we have a bit of time between now and Bridget’s Birthday/Christmas….but we have some things on her wish list for the coming year. Bridget does not need clothes or typical toys. Bridget truly is not into anything, toys, etc… She doesn’t “play” other than to watch her videos on the IPAD. She is just now starting to play with some of the toys that have been collecting dust 🙂 We thought instead of toys/clothes if people wanted to help with some of her therapy equipment it would be wonderful. Of course, most of them are pricey! But here are some ideas for anyone who wants to contribute to the things she needs:

I then included links to the equipment, gave a description of what she would use it for and included the price. For this year’s e-mail I included the following:

As you know, Bridget has a habit of chewing on her fingers. Knowing that this is a comfort and sensory issue, her therapists have suggested we try this Chew Stixx to provide Bridget a safe way to fulfill her needs. Best yet, it is less than $10! http://www.specialneedsessentials.com/chew-stixx-original-no-scent/

For anyone who wants to buy a “toy”, her physical therapists recommend a sorting toysimilar to this Wacky Ball http://www.specialneedsessentials.com/whacky-ball/ (less than $30!)

 

Bridget’s speech therapist has been using the microphone in therapy to show Bridget that her voice has volume. She really has fun trying to make sounds http://www.specialneedsessentials.com/magic-microphone-translucent/ (under $10!)

Thank you, everyone, for understanding that Bridget is a different child than Abigail. Although we know you would love to buy out the Frozen aisle, the above will truly be appreciated by all of us.

Oh and no matter how much Abby begs, she is not to be given a pony.

I was amazed the first year we started the e-mail wish list. Our friends and family want to help Bridget any way that they can, to be able to contribute to her equipment has been empowering for them. In years past, they have assisted with an IPAD®, a trampoline, the LoJack® Safety Net bracelet and a special high chair to allow Bridget to sit with us at the table.

Special Needs Essentials has made the process even easier with their “Wish List”. Using just a few short steps, caregivers can create the wish list for the child and family members to then shop at their leisure. If you have a child with special needs and fear the holidays (or birthdays) as much as I do, I cannot encourage you enough to let your family know what your child needs.

They want to help you; you just have to show them how.”

Kerri Ames

http://undiagnosedbutokay.com/