I'd like for you to meet Marie and Jack...

Hi there! My name is Marie and I blog over at All Access Pass to Jack. Jennifer was kind enough to ask me to do a guest post today and to allow me to introduce you to my little guy and an organization near to my heart.

Honestly, I think these shots might give you an idea of what attracted Jennifer to my blog.

ROLL TIDE! That's right. He's a Bama fan!!!

This is my son, Jack, who was born with Apert syndrome. Apert syndrome is complex and it affects each person differently. Here is the brief explanation that we offer to other children we encounter when we are out and about.

Jack was born a bit different. He did not have separate fingers or toes but we got the doctor to separate them for him. Also, he had some problems with his head that made it grow big but the doctor took care of those problems too. Jack does not see very well so he often uses his hands to feel people and things and Jack is still learning to talk but he is a little boy who likes to run and play just like you.

Its a lot of information to take in so we always finish with the fact that Jack is a little boy who likes to run and play just like other kids. Children often remember just the last part of what you tell them and that's the most important part, isn't it? We'd appreciate it if you'd stress Jack's sameness and not his differences. He is different. Kids will notice that on their own. Help them to see how he is like them. He very much is and he loves being around other kids.

If you see us out and about, please don't worry about your children's honest child-like comments and allow them to ask their questions.


If you'd like more information on Apert syndrome, please go to http://www.thecraniofacialcenter.org/apert.html. This is Jack's main surgeon's website. He gives you a system by system breakdown of what can happen with Apert syndrome. Apert Syndrome affects each child differently. Jack does not have all of the different problems that can happen with Apert syndrome and not everyone with Apert syndrome has the problems that he does.

If you or someone you care about has Apert syndrome, please check out http://www.apert.org/. The site has great information and you can read the stories of many individuals. There is also a list serve that you can join for even more information and support.

Since I mentioned Apert.org, might I ask you a little favor? Would you mind clicking on the icon below and voting for Apert International to receive funds from Chase's Community Giving campaign?

Apert International is a quiet organization that helps out folks with Apert syndrome with travel for medical care, basic necessities, medical costs, a little rest and relaxation or whatever is needed. Each charitable donation made by Apert International is decided on a case by case basis.

There are no long forms or generalities that they apply to a person's specific situation. They get to know the people in need so they can help meet needs in whatever form they come. They talk to the person in need and help him in whatever way he truly needs at the time. Please vote for this worthy organization. It doesn't cost you anything but it can mean a great deal to a family who has a child born with Apert syndrome.

We have traveled numerous times (Jack has had 13 separate surgeries in his first 4 years of life) from Alabama to Texas so that Jack can see a surgeon who specializes in this syndrome. We are fortunate to have good insurance coverage and an awesome family and church family who have helped us to make it there. Not everyone has that kind of support but every child deserves to see someone skilled to do the specialized work needed for this rare syndrome. No child should be limited in their care by where they happen to be born. Look at Jack and see how he thrives. The best thing we ever did was decide early that we would treat with a doctor and at hospital who doesn't ask us to spell and describe Apert syndrome.

Won't you help give another family that chance too? Click below!



Also, I'd love to see you hop on over to my blog and check out the latest installment of my Life is Therapy series for ideas on how you can help your child grow and develop through your everyday routine at home. Sometimes we parents can get bogged down in the notion that the teaching of our children must be done by professionals. Parents of children with special needs are particularly vulnerable to this idea since children with special needs often have to learn and develop quite differently than children with typical needs. This series centers around the idea that learning can and does occur most effectively through everyday life experiences at home and out in the community--for children with both typical and special needs.

Thanks so much for taking a minute to get to know us. I'll leave you with a little music courtesy of Jack.