Friday, January 20, 2012

I was wrong

I received a lot of wonderful and encouraging feedback on my previous posts regarding how to talk to your children about Apert syndrome and what I want to do to handle the "mean people" out there who choose to make fun of Jack. I even wrote a magazine article about it. After a little bit of time and much thought, I have realized that I was wrong.

I have repeatedly said Jack is just like other children. Huh? What was I thinking? Jack is unlike any person (child or adult) I have ever known. He is truly unique. He doesn't fit into any broad sweeping categories like 6 year old boys, kids with special needs, kids of second marriages, kids with visual impairment, kids with fine motor impairments, kids with speech delay, kids with VP shunts, kids with older fathers, or kids with craniofacial disorders.

Jack's interests are scattered across a variety of topics. He can name all the planets in our solar system in order of distance from the sun. He loves to watch YouTube videos of fire trucks and ambulances. His best friends are a basketball named Irish and a red, furry monster named Elmo. He even made up a song last night. The only line I made out was "doo doo doo Elmo's best frieeeeeeeeeeennnnnnd". He loves listening to books on tape with classical music playing in the background. He loves all kinds of animals on a video. The zoo, on the other hand, is a place to ride the train, ride the carousel and "walk on porch!". He loves having other children around and hearing the noise of other children. He wants to interact with other people more and more but probably not as much as your kid does. He still prefers to interact with adults rather than other children. He doesn't like candy. No really. People think we don't let him have candy but he truly doesn't like most candy. He is not a big fan of cake. Again really. I am the mom at the birthday party saying, " Come on. Just try one little bite. I think you'll like the cake." He can figure out short cuts on a computer keyboard that I do not know and cannot repeat. He knows how to operate an ipad better than his dad. (I've learned quickly so one of us can keep up with Jack.) He's being using the potty since he was around a year old (I think, hard to remember because it's been forever) BUT he doesn't consistently go by himself so at 6 1/2 he's back in a pull up to reduce household stress and anxiety over this issue. He'll eat just about anything if it's the right texture. He'd rather have Cheerios and dried fruit than cake or candy. He remembers the things we said and games we played back when he was an infant. He has a knack for knowing when people are truly interested in him as a person. He likes to learn how to say things in other languages yet he still has difficulty expressing himself in English. His favorite place in the world is squished between his dad and me.

Jack had a lot of setbacks during his "crucial" early development years. He is simply not developmentally ready to do things that other children his chronological age do. Jack is a problem solver. When he is ready to do something, you can waste your breath telling him he's not going to do it but it won't change his accomplishing his goal. He's just not ready for whatever reason to do things that his "peers" are doing.

What is this obsession with being "just like" everyone else anyway? We, as a society, seem to thrive on being alike. We judge other people's actions based on our own personal experiences. We all tend to drive the same or similar cars. We run after the latest trends because we don't want to be the only ones left out.

What's wrong with being different? Nothing you say? Exactly. There's nothing wrong with being different. If we believe God created each of us and has a plan for each of us, shouldn't we celebrate our uniqueness? Shouldn't we be talking about how unique we are?

I was wrong. Jack isn't just like your kid. He's different. He's unique. He's not like anyone else. God has a special plan for him just like your kid. :)

6 comments:

Anonymous said...

Thank you! We are not all the same. We are not all meant to be zombies who jump at every new thing and do everything that everyone else is/can/or will do in life. Your child is different, that's ok. It's better than ok, it's great. Sometimes it might be hard, sometimes you might wonder why, but sometimes you'll be amazed and those moments are what it's all about. Take pride in differences!

Lindsee Lane said...

I completely agree that everyone is unique, no matter if we see their differences on the outside or if they are inside. I am a mom of a teenaged boy with Apert's and we are in the first week of recovering from his second La Forte procedure. We are just beginning an 8 week process of healing. During this time, his school work will be done at home his social life will be limited to who decides to visit us, since he won't be going out. My son is a lot like Jack, he enjoys others but usually prefers family. I have enjoyed reading your blog and I am happy that you have posted again.

Penny said...

AMEN!

Marie said...

Thank you all for your support. Lindsee, I hope that everything goes well for your son. Are you on the Apert listserve or in the Apert USA facebook group?

Anonymous said...

Hi Marie,
visiting your blog again because I need inspiration and courage and I know I can get it from you! God be praised for your gift of writing and your willingness to share; you are a blessing to countless I am sure!
I agree we are all unique. Being the mother of eight gives me a special opportunity to see up close the development of each child and wow! It is so amazing how different each one is from birth.
John Paul Ii uses the term " unrepeatability" to refer to the infinite value of every person! Let's treasure all we encounter! God bless, wishing I could meet you and give you a big hug! Julie Foley

Anonymous said...

Hi Marie,
visiting your blog again because I need inspiration and courage and I know I can get it from you! God be praised for your gift of writing and your willingness to share; you are a blessing to countless I am sure!
I agree we are all unique. Being the mother of eight gives me a special opportunity to see up close the development of each child and wow! It is so amazing how different each one is from birth.
John Paul Ii uses the term " unrepeatability" to refer to the infinite value of every person! Let's treasure all we encounter! God bless, wishing I could meet you and give you a big hug! Julie Foley