Tuesday, December 15, 2009
Life is Therapy--An Addendum Today--Girls Make it Fun
Life is Therapy--Goals
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.
For the last few weeks, I've written about how to get your child's attention, remembering how far your child has come and noticing what your child is doing. That's a whole lot of time spent paying attention to where your kiddo has been and what he is currently doing but you want your kiddo to learn, to grow, to develop, not to stay where he has been or where he is. It will happen. I promise!
But first, let's talk a little about expectations. If you're new to the blog, take a moment and go back and read this post about expectations and then this follow up post. The point is that a parent's expectations and your ability to let go of those expectations or not can really make a difference in whether you and your child are enjoying your time together.
And a child is really not learning a whole lot when he is fussing and whining and crying and focused on the fact that he/she is unhappy for whatever reason. A child cannot focus on what you are trying to help him or her learn when he/she is upset. Go ahead. Try it for yourself. Next time you get good and mad for any reason, pick up a how to book on something you've never done before and give it a try. You are not going to achieve your best results.
Being able to let go of expectations does not mean that you don't set goals for your child. I'm not even telling you to not have expectations. Expectations and anticipation can be a lot of fun as long as you are willing to realize that things may not work out quite as you expect and that's okay too.
So, how should you set goals? What can you expect? Dr. James MacDonald is very fond of saying on his Communicating Partners Yahoo message group that you should expect your child to do a lot of what he is already doing and just a little more. He encourages parents to be the child plus one.
The idea is that you meet your child where he/she is. Join the child at his current ability level and then show him/her just the next step. This doesn't work only with speech and communication. It can work with absolutely anything that you want your child to learn.
For example, when your child first learns to walk you allow him/her to hold on to your fingers. Slowly but surely you drop the amount of support you provide. You would not expect your beginning walker to run a marathon the day he/she starts walking. That would be silly, wouldn't it?
What are some other concrete examples? Let's talk about getting dressed. The ultimate goal for most people is to have your child be able to dress him/herself independently and look this smashingly handsome

You can't just hand your kiddo a stack of clothes and expect him/her to know what to do. You have to pick a starting point. Many therapists recommend a technique called "Backwards chaining". The idea is that you allow the child to finish the process. Think of the steps involved in putting on a shirt.
1. Put one arm in shirt sleeve.
2. Put other arm in other shirt sleeve.
3. Pull shirt over head.
4. Pull shirt down over torso and down to waist or however long the shirt is.
In backwards chaining, your first point of focus would be getting your child to do step 4. If your child is not yet helping with dressing at all, you will first make sure to talk about all the steps but particularly pay attention to step 4. Then after your child is in the routine of hearing you talk about each of the steps, you add one more thing. You ask him/her to help complete step 4. At first, you will assist him/her in doing it but gradually you provide less and less assistance until the child is doing step 4 independently. Once your child is confidently doing step 4, you ask him/her to assist with step 3 and so on until suddenly, magically one day he/she snaps that shirt on all by him/herself. Again, I can't guarrantee you these kind of adorable results....
There are several ideas incorporated here. You are breaking up the task into manageable bits. You are breaking the manageable bits into even more manageable bits. You are not overwhelming your child with an unreachable goal. You are allowing your child the success of finishing the task each time versus keeping your child in a mindset of needing you to finish the task.
To review other Life is Therapy posts, click on the title:
Introductory Post
Prepositions at the Park
Rainy Days
Getting Your Child's Attention
Relfecting on Where You've Been
What's in Your Child's World
Now it's your turn to participate. This is where we share our ideas and stories with one another. We're all in this together. Let's laugh together, motivate one another, and stimulate each others ideas. If you have a blog, create your own "life is therapy" post and link to the specific post in the Mr. Linky below. If you don't have a blog just leave a comment with your life is therapy story.
Monday, December 14, 2009
Magic Marker Monday and Awesome Preschool Teacher
Dear People who Give Awards to Preschool teachers:
It has been my great pleasure to know Sunny **** since the day my son started preschool at ***** in August of 2009. Ms. Sunny (as all the children call her) is everything a preschool teacher should be. She is kind, warm, loving, and playful and yet she guides her students firmly with well established and developmentally appropriate expectations. She is actually quite “Sunny” as funny as that may seem to say. In our family’s life, she has been a refreshing ray of sunshine and hope.
My son falls under that broad category of “special needs”. He is legally blind in his “good” eye, is speech delayed, and has both fine motor and gross motor delays. We were very anxious about him going to a new “school” this year. Over the summer, we had finally given him the first break he had ever had from therapy. The result was glorious. He was popping out of his shell and beginning to make real progress. With the start of a new school year, we were genuinely concerned whether all the pressure to fit into the new routine and do as all the other kids would cause him to retreat again. Enter Ms. Sunny.
We could not have found a better advocate for our son than Ms. Sunny. Ms. Sunny helped Jack to learn the structure and routine of her classroom as he could handle it. She did not expect him to know what to do from day one. She pointed out that none of the children were expected to know how to act or what to do and that they all had to adjust. She uses her knowledge of child development and a love for each child as an individual to guide her. There is no “one size fits all” to teaching children and Ms. Sunny knows it. The school district provided therapists arrived and began shaking their heads and saying, “We’ve got to stop letting him play in that little red car. He’s isolating himself socially and we’ve got to put an end to it or he’ll never make friends!” Ms. Sunny told them and us to let him be. You know what? She was right! He played in that little car for several days but, as she predicted, the more comfortable he got the more he ventured out and began to play with and alongside the other children.
When you walk into Ms. Sunny’s classroom, you do not find an environment of “tolerance and acceptance.” The children do not merely tolerate and accept Jack’s differences. Instead, with Ms. Sunny leading the way, they embrace Jack for his sameness. I wrote her an email once and told her that I knew that Jack was behind his classmates developmentally. Ms. Sunny quickly pointed out to me that all of the children in her classroom work on different things at different times. She said that as a pre-K teacher, she was on a mission to help the children to see learning as fun and to help them establish internal motivations for learning. She knew that she could not make goals too high or too low for each individual child. She sees to the “special needs” of each and every child in her classroom.
My son is thriving under Ms. Sunny’s guidance. He has begun speaking more and more everyday. He has even begun to try to talk to us about his school day. Ms. Sunny reports that he is becoming a more active participant in the classroom. None of this would have been possible without Ms. Sunny. Ms. Sunny looked past the label of “special needs”, found the little boy behind the label, and loves him everyday as she teaches him the alphabet, numbers, and the days of the week.
Sincerely,
Marie
Jack brings alot of cute little things home from school and we have a few things that we do at home so I created this little art display area where we can proudly show off his latest creations. He's not a huge fan of crafts and art but I'm hoping that our little showcase and compliments will help him get more into it. I think it may be working a bit. He's awfully proud of that little ghost. :)
Don't forget to check out the latest installment of Life is Therapy.
Sunday, December 13, 2009
Saturday, December 12, 2009
Dinner with Irish
holding hands
Friday, December 11, 2009
Sometimes It Takes a Daddy
Watch this!
Thursday, December 10, 2009
Life Challenged Me
I recently re-iterated how we feel about the genuine curiosity and sometimes embarrassing (for their parents)comments and questions of other children when meeting Jack for the first time. I told here and in my guest post how we explain Apert syndrome to other children.
Recently, we spent a few days surrounded by lots and lots of people we don't know. Those are the times when we get the most curiosity (obviously). We had the full spectrum of reactions.
Some kids did not even seem to register Jack's obvious differences. They just played on alongside and with Jack. Some kids asked a couple of questions and then resumed playing alongside and with Jack.
Then there were just a few kids who would not get anywhere near Jack even after I tried to introduce them.
And, heartbreakingly, there were the kids that (there's just no other way to say this) were mean and hateful. The mean kids called Jack a monster and told other kids not to play with him and to run from him.
I'm not gonna lie. It hurt. It hurt real bad. I did not react well. I withdrew inward. I could not react for fear of the pain inside me jumping out and injuring those little people. And it was killing me that the mean kids were influencing the other kids. I had already tried to introduce Jack to the mean kids but they just were not going to be friendly.
It was just a shock to my system and I did not have a plan to guide me. Though I wish I could believe this would not happen again, the truth is that all kids get picked on for something sometime. Next time, I will remind the child that he is being mean (if you call someone a monster, you know you are being mean) and ask him to stop and again try to introduce Jack. If that does not work, I will ask him to take me to his parent to discuss his behavior.
I wanted to believe that Jack did not hear them but I'm sure that he did. He asked to leave although he'd been having fun and he started clinging to me. We have had a brief talk with him about how some people are mean but that is a reflection on that person and what they are going through, not a reflection of Jack.
I cried a lot and thought a lot and prayed a lot and sought out the comfort of people who genuinely and unabashedly love Jack. Being surrounded by people who love him was all Jack needed. He popped out of the shell he was about to crawl into and enjoyed the loving attention.
But what makes the difference? Why do some kids play with Jack and why are some kids mean? Can I really continue to believe in the inherent goodness of children or do I need to start being suspect of every second glance Jack gets?
After a whole lot of prayer, thinking, and discussing with my other half, I think it's the parents. If the children's parents are not comfortable with Jack and are too busy processing their own thoughts about Jack then they cannot help their children to feel comfortable. They will not encourage their children to play with him if they cannot get past his differences and see him as a child just like their child(ren).
Some people live their entire lives surrounded by people that look and act just like them. When they encounter people who are a different color or speak a different language or have a different culture or use adaptive equipment (wheelchairs, walkers, ventilators, etc.) or have a craniofacial disorder they absolutely don't know how to react. Often, lack of knowledge results in fear. It is sad but true.
So what can I do? How can I show these people that different is neither bad nor scary?
Well, one thing we can continue to do that we do already is to get out there into the world. I truly believe that it does help for people to see Jack being the adorable little kid he is.
I started this blog as a way to keep friends and family easily updated without overloading their email servers. Fortunately, other people have found our life interesting and we've spread a bit of awareness that way.
Fellow bloggers like Jamie at Alabama Bloggers, 5 Minutes for Parenting, 5 Minutes for Mom, and Jennifer have highlighted this blog and helped me to spread awareness. And my bloggy friend Melissa has offered me a guest post on her blog as well. [Promise to get that done soon!] Thank you all so much for being interested in us and for helping us to show others that, although our life is a little different, we are a family living out our lives like so many other families living out their lives.
We will continue to get out in the world and I will continue to blog but I'm also going to have to step out of my comfort zone. I find it so easy to talk to little kids and to write about how I think and feel but in the live presence of other adults I can be quite shy (friends and family please do not overload the comments with proof that I am not shy--I know all of you! *smiles*). I can connect with most kids and usually use that as my opening to connect with the parents. Obviously, that's not always a winning formula. So [deep breath], while we are out there in the big wide world I'll start stepping up and introducing myself and Jack a little more often.
Don't forget to check out the latest Life is Therapy post.
Tuesday, December 8, 2009
Word(less/ful)/Special Exposure Wednesday--Random Cuteness

Don't forget to check out the latest installment of Life is Therapy.
Monday, December 7, 2009
Life is Therapy--What's in Your Child's World?
New to the Life is Therapy series? Here's a quick blurb to tell you what it's about:
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.
Back on November 23, we talked about entering your child's world. I showed a video of me trying to direct Jack's play with complete disregard for what he was doing at the moment. He ignored me. Then I decided to sing about what he was doing and we enjoyed a short interaction. You can see that post here.
When you first enter your child's world, it will be quite foreign. After all, you are an adult and you know that there is a set order to the world and a set way that you are supposed to behave (according to each person's culture that is). Try to put aside all your pre-conceived notions of how things are supposed to be and just watch your child.
When you watch you may see something like this....
.Jack has both a visual impairment and fine motor skill impairment. Jack is legally blind in his good right eye and has light perception only in his left eye. He is adapting to his visual impairment and lack of depth perception. Some of that adaptation results in not really looking at things. Instead of grabbing Smiley with the car, he just grabbed Smiley. He pulled him out of the car but did not notice as he tackled the next challenge of getting Smiley up onto the ramp. Jack was not born with seperated fingers on each hand and he is missing joints in his fingers so his grasp is different from a person with a typical grasp. So the above, simple, fun activity is challenging on a couple of fronts and what's that? Yes, ladies and gentlemen, it is therapeutic.
You don't always have to set your kids up for a "Life is Therapy" skill advancing moment. When you watch, listen, and think, these oppurtunities often jump right out at you. BUT resist the urge to jump in and correct and tell your kiddo how to do things "correctly". See what happens your kiddo's way. In this case, Smiley fell off the top of the ramp but you never know. The kiddo's way may work out.
I just said, "Uh oh, Smiley!"
Jack repeated, "Uh oh."
We had a short conversation (speech therapy) at Jack's level of 1-4 word simple phrases and decided that we should try putting Smiley in his car and then down the ramp.
Jack got in some more fine motor and visual therapy first finding Smiley's car, then putting Smiley in, and trying to orient Smiley on the ramp. Of course, we engaged in speech therapy as we chatted and he asked for help as needed and I made suggestions when asked for help (help does not have to mean do it for me).
We finally got him oriented, Jack pulled on the "launch latch" and off Smiley went.
Other Life is Therapy Posts can be found at:
Introductory Post
Prepositions at the Park
Rainy Days
Getting Your Child's Attention
Relfecting on Where You've Been
Now it's your turn to participate. This is where we share our ideas and stories with one another. We're all in this together. Let's laugh together, motivate one another, and stimulate each others ideas. If you have a blog, create your own "life is therapy" post and link to the specific post in the Mr. Linky below. If you don't have a blog just leave a comment with your life is therapy story.
He's gonna live...
More proof that Jack's becoming a social butterfly? Until it was his turn to go in the exam room, he walked around the doctor's office into the nurse/doctor area and said both the doctor's and the nurse's names. He was mighty proud of himself!
For further proof that Jack L-O-V-E-S ham buh guhs, here's a shot of Jack painfully choking down one bite at a time. You should see the face he makes but he won't eat anything else so it must be worth it to him.
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Sick puppy
Just a Quick Thank You
My bloggy friend Jennifer of Dust Bunny Hostage is one of those people. She has graciously put up a guest post from yours truly hoping to spread awareness and help me out with supporting Apert International. Please stop by and leave a comment with some bloggy love! :)
Don't forget to check out the latest installment of Life is Therapy.
I can't leave you without a picture of the cutie tonight. Here's an oldie but a goodie. This was the afternoon that Jack first got his glasses back in August of 2006 when he was barely a year old.
Saturday, December 5, 2009
SEC Championship Happiness
Christmas Lights!
Don't forget to check out the latest installment of Life is Therapy at http://allaccesspasstojack.blogpsot.com/2009/12/life-is-therapy-sometimes-you-have-to.html.
This message has been sent using the picture and Video service from Verizon Wireless!
To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.
Note: To play video messages sent to email, Quicktime@ 6.5 or higher is required.
Friday, December 4, 2009
What is Apert Syndrome? How do I explain this to my kid?
So you've seen us around at the park, the playground, or the store or maybe you just met us through this blog. You've already read what I wrote about children's comments and allowing them to ask their questions but you'd like to explain to your child what Apert syndrome is in a way to help them know a little more about Jack.Here's what we say. It's not scripted. It's just always something like this. Jack was born a bit different. He did not have seperate fingers or toes but we got the doctor to seperate 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 them. 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'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 listserve that you can join for even more information and support.
Don't forget to check out the latest installment of Life is Therapy for ideas on how you can help your child grow and develop through your everyday routine at home.
Thursday, December 3, 2009
You Can Help and It's Free!
Check out the latest installment of Life is Therapy.
He's on His Way Now....
We have some friends who were nervous about their first meeting with Jack because, you know, he's a rock star! I laughed when they told me about that and said, "Oh, he's just a kid." Some of our friends have decided that Jack really should be a rock star so they gave him his first guitar.
It was supposed to be a Christmas present but I knew he would love it and couldn't wait.
This short clip is made up of a bunch of pictures from the first time we opened the guitar case and showed it to him.
And here he is giving a performance of his skillz a few days later, surpisingly in the exact same outfit. Rock Stars are funny people.
Thank you so much Rodger, Carol, Ethan, and Adam! Sorry that we did not wait for Christmas. :)
Check out the newest Life is Therapy installment here.
PS. Anyone who wants to donate carpet cleaning to us so that these pictures and videos will be more aesthetically pleasing to the eye, please contact me at empwrn@bellsouth.net.
Tuesday, December 1, 2009
Word(less/ful) and Special Exposure Wednesday--Isaiah's Visit

Sidney's
Life is Therapy--Sometimes You Have to Stop & Reflect on Where You've Been
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.
Last week, we talked about entering your child's world. I showed a video of me trying to direct Jack's play with complete disregard for what he was doing at the moment. He ignored me. Then I decided to sing about what he was doing and we enjoyed a short interaction. You can see that post here.
That was the original beginning of this blog post and I was going to go into more detail about matching your child but I'm going to save that for next week now. This post is late getting out. Jack's been home sick from school and I have had a very busy couple of days at work. Jack seems to be getting over his pink eye and ear infection very quickly but tonight has been a rough one so far. He has thrown up into his mask already and I've already had to clean out his mask again because he's had so many secretions. Nights like these it's easy to get a little down.
But that's when I think back to days like these. Looking back, I don't know how any of us made it through that very trying period with so little restful sleep.
And I remember the gratefulness I felt in this post. Back then I was excited to see him carry little plastic balls in his hands. These days he walks around everywhere with a big green basketball.
Tonight he told me "Jack shoes off in house. Go away." because he did not want to wear the house shoes that I was trying to get on him.
When I came home today, I said, "Ah, I missed you." and Jack said "I miss you!" How very sweet. He is blossoming before my eyes.
Yes, some nights are a little rough but overall Jack is developing by leaps and bounds.
So, on those days, when you find yourself wondering if your kiddo will ever learn anything you are trying to teach him/her, take a step back and look at where you've been. It's very therapeutic for moms and dads. Life is Therapy for us too!
Other Life is Therapy Posts can be found at:
Introductory Post
Prepositions at the Park
Rainy Days
Getting Your Child's Attention
Feel free to share your thoughts. How do you perk yourself up on those tough days?
Now it's your turn to participate. This is where we share our ideas and stories with one another. We're all in this together. Let's laugh together, motivate one another, and stimulate each others ideas. If you have a blog, create your own "life is therapy" post and link to the specific post in the Mr. Linky below. If you don't have a blog just leave a comment with your life is therapy story.








































