Parenting a Rare Child

Daddy & Spence
Before Spencer was born I had questions about how I would do as a dad. In many ways it was a blessing to me that I didn't know ahead of time that he would be born with TAR Syndrome. As we have become more and more accustomed to what it is like to raise a child with special needs, we have realized that for us as parents, it is an on-going growth process. (for us, not him!)

Part of the amazing journey of being the guy who is honored to be Spencer's dad, is meeting the amazing families & parents who have children with any sort of non-standard body configurations. Doug and I often laugh that, when you go out with Spencer, you are (at best) the "Edge" to his "Bono" given what a rock star that he is.


Another honor is being able to help pass along many of the things I have learned along the way.

I hope that this newest launch of Spencer's site will help all those who are faced with the challenge of TAR syndrome or any disability that requires a child and their family to create courage out of thin air.

Our Deep appreciation goes out to Katherine Thackston for building this latest incarnation of Spencer's website.

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Tips & Tricks Print E-mail
Tip#1 - Don't do it alone Join an online community of people. Talking to people who know SPECIFICALLY what you are going through makes all the difference in the world. It also gives you something "to do" and keeps you from going down any dark holes alone. Make friends, ask questions and arrange to actually meet with peple if you can. One of the greatest moments for us was meeting with Ethan and Danny, 2 awesome kids with short arm TAR just like Spence. We walked in to this house and there they were sitting on the floor playing Nintendo. Ethan had the controller close to his chest and was using his hands, Danny was playing with one foot. It showed us that they were just kids. They are happy and have found ways to do the things they want to do. It helped us relax about Spencer's future.

Tip#2 - Usually, you are the expert with the most research

Always ask a lot of questions of the medical community. They are trained for emergency situations and if that is the case, get the hell out of their way and let them do their job. However, in non-life threatening situations, always remember that they work for YOU.

This is critical when it comes to rare disorders. Many times you WILL know more than they do. We have people at the hospital that know Spencer but every time we get a new resident, his mind exploding with questions, we simply give him the website address and tell him to come back and speak with us afterwords. We do this happily and look at it as our way of raising awareness one physician at a time.

Our medical care has been astounding and all the hospital staffs have been great. But once when they told me the number of CC's of platelets they were going to give him, smething didn't make sense. it was less than the 2 times before and I asked them to call the doctor back to confirm. Sure enough, they loked at his chart and ended up giving him 4 times the amount they were going to. Ask questions.

Tip#3 - Stay present

Take time to cherish your child. Forget about blood counts and assistive devices for a moment and just look into their eyes. Stay present with them.

Tip#4 - Take care of you

Take time to get the hell away from your child so you don't go bonkers! Take turns having "mini-vacations" were you go out with a friend and forget you are a parent for a while.

Tip#5 - Pamper each other

Bend Heaven and earth and take your partner out on a date, WITHOUT the bambino. Eat somewhere way too expensive and have something really yummy. DON'T talk about the kid, just for a little while...

Tip#6 - Little things

Guys, do something romantic for your wife at least every 3 weeks. It doesn't have to be big, in fact sometimes the little ones are the best.

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