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. :)

MUST READ

I miss blogging. I really do. I miss my bloggy friends. life is really really busy here and it's wonderful. I read something today that absolutely brought me to tears so I had to take the time to share it. http://momastery.com/blog/2012/01/13/on-gifts-and-talents-2/

We've been homeschooling since last October and it's working really well for our family although we tend to stay very busy and occupied between work, school, home, and family.

Sorry for the lack of posting here lately. Jack has been great. He's growing. He's developing. We have no major medical things going on. We're adjusting to spending our lives away from doctors and hospitals.

No More Gimmicks

When Jack was little, I wanted to know what gimmick would make him enjoy tummy time and start crawling around. He army crawled a bit so then I was looking for the gimmick to get him to walk. I saw other children happily sitting in the little group circle for circle time and I wondered what gimmick would make Jack do the same. As he continued to grow but not talk I wondered what gimmick would make him start talking. Still I read, I ask other parents how on earth they got their kids to do this and that.

When I'm at my best, I realize there are no gimmicks or maybe there are but Jack and I don't need any. God is at work in Jack and through Jack. He has his own timetable. God's vision of Jack is perfect. And Jack is happy. He is happy to be who he is. He's happy to do what he can do. He's happy to test out his rapidly growing list of physical skills.

What Jack needs, what I need is relationship. I need to meet that little boy right where he is and relish and love that stage we're in even as I encourage him to move toward that next step. No gimmick will make life more fulfilling.

sent via the Verizon Network from my Blackberry

Late Entry into Thirty Days of Play Challenge

We're late joining up but I'm excited to join Hands On: As We Grow and The Imagination Tree in the 30 Days to Hands On Play Challenge. You can read about it here and here. Every day, they take turns providing a play idea for us to try. We are going to put aside 15 minutes a day of dedicated, non-interrupted play.

At our house, we do "special time" at least once or twice a day but those are times when I promise to allow no interruptions and I allow Jack to lead the way in play. This will be a separate time of play where I will attempt to lead the way with a play idea.

I don't want to go all legalistic on us by going back and doing all the play ideas that have already been presented this month so I'm going to do the day 1 challenge of saying what I hope to accomplish in the challenge and tomorrow we'll dive in with the challenge for day 17.

From http://www.theimaginationtree.com/2011/11/30-days-to-hands-on-play-challenge.html:

Day 1:

Today's activity

Spend a little bit of time thinking about this challenge. What do you hope to gain?

Think about your child (or children) What do they really love doing? What are they good at? Their special interests? This will be really helpful as the challenge unfolds.

My answer:
I have a very simple short goal: to expand our play. We get stuck in a lot of doing the same things. Jack and I both tend to like things staying the same BUT we need some fresh new things to try to improve Jack's development and mine.

Jack loves to move, move, and move some more--run, jump, bounce, skip, ride anything with wheels. As Jack's speech continues to emerge, he likes to play with sounds, words, and phrases. He is most joy-filled when he has my full attention and we are playing together. He tends to be a "sensory seeker". He enjoys swinging, being squeezed tightly and spinning (himself, balls, pinwheels, wheels, and gears and anything else he can get to spin). He does not do much make believe or fantasy play except playing with Elmo.

I'm excited! Wish us luck and say a prayer as we work on expanding our play repertoire. I probably won't post everyday but will more likely do a recap every now and then of how things are going with the different challenges.

Here's my partners in play:

Do you remember when the world was an amazing place full of delightful surprises every few minutes? It's fun to watch Jack grow and plan and work and work on his own objectives. He makes the most gains when he has his own goal in mind. Spinning a hot air balloon is quite the motivator. Who knew that this colorful little spinning thing would help Jack work on planning, estimating, and evaluating? When is a hot air balloon a speech therapist, a physical therapist, an occupational therapist, a teacher of the visually impaired, and a kindergarten teacher? Take a step back and just watch your kiddo during play. It's amazing!

Wordless Wednesday