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.

Notice
  • Please enter your Disqus.com subdomain in order to use Disqus powered comments! If you don't have a Disqus.com account register for one here
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.

From a Great Aunt

To the Parents of Spencer Hawk,

I can not tell you how glad I was to find this website. My greatnewphew Nashaun, was born with TAR. He's about 2 months old. Nashaun and his family live in Savannah, Georgia. I met little Nashaun for the first time just this past weekend. He is the sweetest baby I have ever laid my eyes on.

Myself, along with Nashaun's parents Nathramos and Michelle, are still trying to come grips with this rare disease. Nashaun's parents were told that he was the only case of TAR in the entire state of Georgia. This has truely made them feel helpless and at a lose. I was looking for statistics and support groups of the disease when I came across the website for your beautiful little boy Spencer.

I just wanted to say thank you for your contributions to spreading awareness of this disease. Please let me know if their is anything I can do to further your, correction, "our" cause in raising awareness. Also if you have any information regarding support groups in or around the Savannah, Georgia area, please let me know.

Susan's Glorious Family

Hello and Thank You.
My name is Susan, and my husband Kurt and daughter Anna are the proud family of Will. Will has TAR. He is 9 ½ months old and every bit as cute as Spencer. In fact, they share size (at 9 months will weighed just shy of 22 pounds), "cute" dimpled knees, and very short arms.

We have been extremely lucky. Will has not had any platelet transfusions since he left the hospital 12 days after his birth. He had one hospital stay after throwing up blood, but that was due to gastric reflux (maybe or maybe not due to allergens, I was nursing, but also following a milk and soy free diet). He gets around almost anywhere with a pull of his legs and a hop of his butt (totally adorable), but the word is still out of walking. Our next Shriners appointment is in three weeks.

Your site has been important to us. We, like you, have tremendous support from our friends, family, doctors and community. He is happy and healthy and shows all the appropriate developmental signs. So many other TAR resources are almost frightening, especially early on. We access your site about once a month or so just to see what Will might be doing next!!

Yes, we would definitely try to make it to a "convention". We live in Vermillion, South Dakota, so everything is far away, but Chicago would be perfect. Anyway, just wanted to say thanks. I am in the process of joining the Yahoo TAR group, my first on-line group. My hope is that we'll get to share ideas for good toys and other innovations that allow our kids to live life to its fullest!
Best to you and your family, Susan

From an occupation therapist

To the Hawk Family:
I thank you for sharing your information through your wonderful website. It is very inspirtional. I am a school occupational therapist and I have a new student this year who has Von Willebrand with radical plasia/tar syndrome.

She is in the 6th grade and very independent. so much so that I am at a loss as to how I can be of help. But I want to make sure I am doing everything I can possible do for her or get for her. I was wondering if you could tell me as a parent what things you found most helpful in school and what your ideal for Spencer would be in school, as far as therapy, equipment, services, accommodation, etc.

Also, if possible could you pass this message onto his occupational therapist so I could communicate with him/her regarding the needs of my student. The biggest problem for my student is the social aspect. I would be interested in any insight you could give me to help her with that as well. Thank you very much.

Published in Subscribe to the RSS feed of TAR Syndrome  TAR Syndrome / Subscribe to the RSS feed of Parents Helping Parents  Parents Helping Parents
Like this? Let your friends know now!
back to top
 
Katphish Designs