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.

Parents Helping Parents
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.
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Feedback From Other Parents and people with TAR... Print E-mail

Kelly's little boy is getting married!

Hi Spencer and mom and dad. I hope you are well Spencer. I am contacting you to tell you about my little boy. He was born with the same thing you were. He is know 24 and going to be a father for the first time. We are all so happy. You have a lot to look forward to in life and don't ever let someone tell you you cannot do something. They are not you and you know your limitations, which we have found through our son are very few. He drives, works, writes, sings, laughs and loves just like everyone else. His life is full and rewarding and yours will be too. Sending you and mom and dad all our best, with love to Spencer,Kelly

Supreme Wisdom from Symone - 12 years old with TAR

hi my name is symone i to have tar syndrome but i do have arms. i would like to know if spencer will be attending public schools in the futrue,because i still am. if he is here is some advice to you: if he comes home crying it is very normalkids are cruel, but he will hear it so much it won't even bother him any more.2: if he wants to be envoled with sports let him, my parents did. 3: make sure he grows up to be sweet-hearted kid with no worries and belive me if his teachers say he is the most happest kid they have ever thaught then you are diffetly doing something right. 4: don't worry about him to much, it kind of makes him worry about you. from symone 12 years old ( i typed this myself with no help) P.S. if asked why or how this happened to him just tell him.
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