Monday, August 30, 2010

A day at the park

Today was another gorgeous day so we headed to the park.  We met up with some friends, played on the swings, had a picnic and took a short walk in the woods where we found a great set of stone stairs that the kids really enjoyed.  Life is good!

Sunday, August 29, 2010


This weekend we decided to branch out from our standard list of activities and try something new.  Since the weather was gorgeous we decided it was the perfect night to hit the Cowtown Rodeo.  I think everyone in the area decided to go to the rodeo, too, so there was plenty of people watching if all the action in the rodeo wasn't captivating enough.  But, for us, it was enough!  We all had so much fun!  

Since it was our first time we weren't sure what to expect.  There were quite a few "events" to the rodeo and we left after about 2.5 hours and it was still going strong.  It started off with bull riding and the cowboys managed some great rides - not that we would know, but the announcers were kind enough to tell us all about it along the way :-)  The bull riding was followed up with steer wrestling and then the Cowgirls raced their horses around a course in the ring and then a two cowboy steer catch where they roped the calf around the horns, the feet and tied them up.  This was the one where I started to feel pretty bad for the little calves, but it seems like none of them were hurt and they sort of knew the drill and when the cowboys missed them and they "won" they did have a saunter around the ring.  I liked when that happened.  After that it was more cowgirl horse racing.  Julia loved the cowgirls.  Emma loved the action in the stands and especially the little kids sitting across the aisle from us.  

At 10pm we called it a night and packed up to go home.  Julia asked for a lasso and she practiced with it today but still has room for improvement.  She is already planning our next trip back and decided we need to stay until the end to know what else happened.  We made a deal that we will stay until the end if she takes a nap that day before we go.  We'll see how that works out.  Who knew that my sensitive little girl would be a rodeo fan??!!

The is one new activity we are all looking forward to repeating!

Friday, August 27, 2010


When I run errands I usually try and avoid as much traffic and congestion as possible.  I mean, who wants to deal with more of that than necessary, right?  Anyway, the quest for a seamless route back to my house usually has me driving through a neighboring development instead of traveling the standard roads.  And, each and every time I drive through this development on the way home I pass this sign:

I'm not really sure how I feel about this sign.  I guess it is there to warn drivers to slow down or not depend on their horn, which they should be doing anyway for ALL children.  But this sign.....it makes me wonder about the child behind the sign.  Is the child old enough to know the sign is there?  Does he/she feel like it brings too much unwanted attention?  Do neighborhood kids tease him/her about this sign?  Isn't it hard enough to fit in already without adding a sign outside of your house?  It also makes me think about the parents behind the child.  Did they ask to get this sign put up?  Are they happy it is there?    

When I turn onto my street I am greeted with another sign that gives a different message.  The sign on our street applies to all children and is a great reminder to all drivers to slow down:

This sign refocuses me that I am back in a neighborhood and should slow down and be aware of children at play.  I like this sign.  I like that it does not single out any one child or have a stigma attached to it.  I like that it doesn't make me wonder about the children behind the sign and that it seems so very inclusive for a street sign.  Yes, I like this sign.    

Thursday, August 26, 2010

Fun at the Farm

Scenes from our afternoon at the farm.  Sigh.....have I mentioned that we just love spending time there?

Tuesday, August 24, 2010


Today the girls and I had a super busy day.  There were 3 therapy appointments, one trip to the doctor, two trips to the pharmacy, one trip to the vet, two loads of laundry, well.....you get the idea.  After we dropped the prescription off at the pharmacy drive-thru we had about 10 minutes to do something and since it takes me that long to get the girls out of the car we took a short drive to look at the outside of the school where Emma might go in October.  

When we visited the school in the spring the pre-school was in trailers right near the building and we were told the trailers were going away and the class will be in the school this year.  When we drove up to the building the trailers were gone and there was a large dirt field with various debris where they sat.  The playground behind the school was sparse, overgrown and not very accessible (we were told in the fall that the PTA built the playground for the children since the school district doesn't fund it at all).  Basically, my heart sunk.  

Now, that said it is likely they are putting the finishing touches on the school before it starts and it will be cleaned-up by the start of school and certainly should be in better shape by October.  I've heard good things about the teachers in the pre-school program and they seemed very caring when we met them, so that is a positive for the program.  

It's just that this is not what I had in mind when sending my children to school.  I never thought they would be going to two different schools, two different curriculums, two different sets of teachers/administrators/staff - two different school families.  I never imagined that I'd have to learn all about IDEA, IEPs, special education, advocates and due process.  I'm sure none of us did.  

I love where Julia attends pre-school and said out loud I wish Emma was going to school with Julia.  I hadn't really realized I said that out loud until Julia said don't worry Mommy, she can come to school with me and she'll love it.  I had to tell her that she can't go to school there just yet and she asked me why.  I told her it's because Emma doesn't talk or walk yet and she replied when she gets older and does that stuff she'll come with me.  

I responded that yes, that is what I want.  When she gets older my wish is that both girls can go to the same school of our choosing - private or pubilc.  And Chris and I are doing everything we can to try and make that a reality.

But, in all honesty?  I wish they would attend the same school now.  If anyone in Delaware or Southeastern PA knows of inclusive local (private) pre-schools that are not priced at full-days 5 days/week, please let me know.  I had thoughts of a local church pre-school that would embrace Emma, but I'm finding it hard to find one.

Monday, August 23, 2010

It Happened

On a rainy Sunday afternoon.  Just an ordinary day.  Our little girl embarked on a right of passage.

It started simply - looking at the earrings in the case at the mall.  They had PINK earrings.  Who could pass that up?

Which led to sitting in a seat.

That resulted in getting her ears pierced.  It hurt for just a moment, but that is the moment I caught on film.  

Once she saw herself she was all smiles and has been since then.

She loves her new earrings.  Chris thinks she looks 10 years older now.  I think she is beautiful no matter what and that time is flying by and our little girl is growing up and she now has pierced ears.  And she is oh so happy!  And so that makes me and Chris happy - even if he had a sad face for a moment.  

Sunday, August 22, 2010

Whirlwind week

This week was filled with fun, fun, fun.  We spent a few nights in Ocean City, NJ where we had gorgeous weather, lots of time relaxing near the water (beach and pool), thrills on the amusement rides and plenty of walks on the boardwalk.

Julia really amazed us with how much better she is at swimming now than she was two weeks ago.  She has no problem jumping in the pool from the side either straight in or adding in a rotating twist jump.  She is regularly putting her whole head under the water and staying there for a few moments at a time.  She is swimming from one end of the pool to the other with a bit of flotation assistance in the way of water wings or swim noodles and she is doing this at a very FAST speed often beating me and Chris to the other side :-)  It's so fun seeing her grow in confidence in her swimming ability and watching her push herself outside her comfort zone to achieve the next level.  Emma continued her love affair with all things water and is starting to do even more kicking of her legs and pushing her feet off the pool walls and all this looks like she is starting to get the idea of how to swim so swim lessons could be in the plans for Emma come next year.

We also spent a couple of days on the beach where the girls managed to get sand wedged into almost every spot on their little bodies!  They had a ball playing digging in the sand and jumping the waves in the ocean.  True to form, Emma had no fear at all going in the ocean and playing in the water.  Julia took a bit more time to warm up to the ocean but eventually had a blast jumping the waves with her cousin Brianna.  Julia and I took a few walks along the beach to look for sea shells and she found some to bring home.  Emma lounged in a seat that Chris dug for her in the sand and looked at all the people walking up and down the beach.  While Chris and I both enjoy the beach, we were happy the hotel had a pool since taking both girls to the beach is a lot of work for us - the sand does not make it easy to transport people who are not mobile!

We would have thought all the water play would tire the girls out, but they had plenty of energy to hit the boardwalk every night.  We went to two different amusement parks and went on nearly all the rides for their ages.  The slide was Emma's favorite and she started laughing from the time we were climbing the stairs to get to the top and didn't stop until she was back in her wheelchair.  Julia decided to go on the Tilt a Whirl more times than any other ride so that - along with nearly all the other rides! - could be her favorite.  She didn't hesitate on any of the rides this year and is really growing into such a big girl.  I can't believe how much she has grown from her first summer ride on the carousel at 6 months of age to the have-no-fear-take-no-prisoners ride goer that she is today!

One morning we rented a couple of bikes and rode the length of the boardwalk.  Emma did great in the baby seat attached to Chris' bike - we weren't sure how she would do as it was her first time on a bike.  I think we'll have to look into getting a bike seat for Emma for next year.  I don't know if a seat or a trailer would work better so we'll have to investigate.  Julia and I shared a bike that had me in front and Julia on a bike attached behind mine.  It was a great set-up and made it so she didn't have to do all the work of pedaling along the boardwalk by herself so we were able to go a long distance in a short amount of time.  The bike ride was a highlight of the vacation for me and was a great way for us to share some time together.

Our vacation overlapped with Chris' family and it was so nice to spend time together.  We all went out for dinner one night and stopped at the bar for a drink while we waited for our table and Chris and I decided that we would definitely go back to that bar next visit to OCNJ.  It was a great spot right on the water that has live music and great atmosphere.

We had a blast at the shore and we left talking about what we'll do when we go again next year.  I couldn't help thinking to myself that maybe we'll get back again before next year.  After all, life has taught me that you never know what might happen.......

Thursday, August 12, 2010

Hopeful Parents

I mentioned in a previous post that I am honored to join the writing team at Hopeful Parents.  Well, today I published my first post (click here to read it) and will continue to post on the 12th of each month.  

This is an amazing site that is a grassroots community where parents who understand what it's like having a child with special needs can connect.  Here is a bit of an introducion on Hopeful Parents from the founder, Christina Shaver:

Consider it a pit-stop in the marathon -- where we can go for attention to our wounds, where we can re-energize our way back on track, where we can look right and look left to see others running too, where we can hear the roar of the crowds cheering us on.
Hopeful Parents is a place of common ground.
We'll introduce you to our diverse pool of talented, thoughtful writers who will share their stories, their feelings, their ups and their downs.
You'll meet parents raising children with physical, psychological, emotional, neurological, sensory, behavioral, social, genetic, and developmental disabilities. Some parents are single, some are married. Some grieve the loss of their child; some grieve the loss of their spouse.
You'll also meet healers -- the "medics" who help us through our run. People we can turn to in our pain; people who can help provide some relief.
These writers -- the parents, the healers -- remind us that we're all on this journey together. We don't have to go it alone.
And with that spirit of togetherness, I invite you to get involved with Hopeful Parents. An easy way to start is by commenting on the posts that move you. Then explore the sidebar. There are quite a few links with ways to participate. Please check them out.

I invite you to visit Hopeful Parents and look around a bit.  I think you will be uplifted.  

Wednesday, August 11, 2010

Preventing Harmful Restraint and Seclusion in Schools Act

As we start thinking about Back to School, I keep thinking about the information I uncovered while researching Senate Bill 2860 - Preventing Harmful Restraint and Seclusion in Schools Act that I wrote about in this post.

Did you know that children are being harmed and killed in our schools?  Consider the following incidents.  Please note that I've only provided a few examples from across the country that show how children are not protected at school.  To read the many more examples, you can read what was reported here.

Deaths resulting from restraint or seclusion:
  • Michigan: A 14 year old middle school student was killed when his teacher held him down, ignoring his plea “I can’t breathe, I can’t breathe.” Knowing that the student, with a mental illness and other disabilities, was sensitive to food issues because he had been denied food when he was younger, the teacher sought to punish the student for his aggressive behavior by refusing him lunch. When the student tried to leave the classroom to go to the lunchroom the use of deadly restraint by the teacher ensued.Did you know that children are being harmed and killed in our schools? 
  • Texas:  A seven year old girl was suffocated and killed at a mental health day treatment facility when several adult staff pinned her to the floor in a prone restraint. This child, who was diagnosed with an emotional disturbance and Attention Deficit Hyperactivity Disorder, died because she was blowing bubbles in her milk and did not follow the time-out rules regarding movement.
  • Wisconsin:  A seven year old girl was suffocated and killed at a mental health day treatment facility when several adult staff pinned her to the floor in a prone restraint. This child, who was diagnosed with an emotional disturbance and Attention Deficit Hyperactivity Disorder, died because she was blowing bubbles in her milk and did not follow the time-out rules regarding movement.
  • Georgia:  A 13 year old hanged himself in a small concrete-walled, locked seclusion room using a cord provided by a teacher to hold up his pants.  This eighth-grader had pleaded with his teachers that he could not stand being locked within the small seclusion room for hours at a time. The boy had threatened suicide in school a few weeks before his death.
Incidents of students getting pinned down, tied up and battered

  • Alabama:  An eight year old boy with autism in the second grade was physically restrained by school staff to manage behavior issues.
  • Arizona:  A five year old boy with autism was repeatedly physically restrained despite his mother’s repeated demands that such restraint be stopped.
  • Arkansas:  Fearful and resisting her removal to the “blue padded room,” an eight year old girl with autism was tied down into a wheelchair by a vice principal who proceeded to wheel the child down the hall and isolate the screaming, terrified little girl in the seclusion room.
  • California:  In a rural school district in California, a ten year old non-verbal boy with multiple disabilities was tied to his wheelchair and left on the school van in the parking lot for hours on two separate days. His wrists were tied to the arms of his wheelchair with components removed from the safety vest used during transport on the van. His legs were bound together at the ankles with a nylon Velcro strap. On an unscheduled visit to the school, his mother was outraged when she found him unsupervised, alone, bound to his wheelchair on the van.
  • Florida:  A behavior tech broke the arm of a boy who has bipolar disorder and autism, while attempting to restrain him. The boy suffered a "spiral fracture to the upper right arm," according to emergency room staff. He was taken to his after school program by a bus aide who told police he cried the entire ride. But she said she “didn't take (the boy) seriously because he behaves this way all the time." His after school program discovered a red swollen arm and abrasions on his face. A teacher not involved in the incident told police she found the boy alone in the classroom, laying on the floor crying.
  • Hawaii:  Discovering bruises on her daughter’s hips, a mother contacted the school where they admitted that the seven year old girl with developmental disabilities and deafness was frequently tied to her chair, her hearing device removed by school personnel, because she would not stay in her seat. The bruises were caused by the strap used to tie the girl down.
  • Illinois:  A mother strenuously objected to her three year old son being routinely restrained in a positional support chair. Her son, who has severe autism and is non-verbal, was restrained by straps in the chair or by utilizing the tray to restrict his movements. After reaching agreement with the school that the positional support chair would only be used for its therapeutic purpose, the parent was dismayed to observe her three year old restrained in the chair again, unattended, and with no school activities being provided to him.
  • Kansas:  A three year old boy with autism didn’t know the rules of sitting during certain times in a publicly funded preschool. After two days the teacher, and the staff decided that he was too much to keep up with, so they put him in a chair intended to provide postural support children to children who are physically disabled. He remained in the chair for varying amounts of time. Often he sat while the other children were playing or doing group activities. All he could do was sit beside the wall and watch. He could not get up because he was strapped in this stiff wooden chair.
  • Kentucky:  A six year old boy diagnosed with bipolar disorder was forced to sit in a partitioned area of his classroom. When behavior issues erupted in the classroom three school personnel, all males, came into the classroom and physically dragged the child out of the school and into a van. He was taken to his therapist’s office so that she could see how “bad” he was.
If you want Senate Bill 2860 to pass, please call your State Senator and ask them to support this bill.

Sunday, August 8, 2010

Run of the Mill Update

I haven't entered an update to remember what is happening this summer, so this post is a run of the mill update on what is happening with us this summer and will probably be boring to anyone that is not me ;-)

Julia loves going to camp this summer.  She decided on mostly half days Mon, Tues, and Wed instead of full days.  She prefers to skip a nap and if she is there a full day it includes some nap time.  She decided on the days to attend based on activities of the day.  Mondays have a visitor come in and do demonstrations for the children - so far they have had dogs, jugglers, moonbounces, obstacle courses, and the firemen with their trucks.  Tuesdays are morning field trips and the BIG DRAW for that is the ride on the school bus.  Seriously, if the camp just put the children on the bus and drove them around town for an hour or two without stopping anywhere I think the kids would be thrilled - they love the ride that much.  The camp does not do this, though, and the children get to go to great spots like the Can Do park, XBos Indoor entertainment center, bowling, the movies, and the theatre.  On Wednesday they have water day and the water area at the school is very state of the art with water coming from the ground and squirt guns and all.  After camp she loves to come home and play with her dolls all afternoon which, along with playing house, is her favorite past time.  We also took a few weeks off of camp to just enjoy some down time and vacations and I think Julia really likes the variety each week is providing us.  Julia also now has a fish that she won at a local carnival.  The goldfish's name was previously Wendy, but she changed it to Goldie shortly after she told everyone at camp about her fish and I think they decided Goldie was a better name.  We prepared Julia each night for a long while that in the morning Goldie might not be alive, but she seems to come from hardy stock since she has made it with us for over a month now.  Goldie now has her own fish bowl complete with decorative pebbles and a fake tree.  Honestly, this is a pretty cool fish.   She seems to perk up when she sees us and zips around the bowl and has quite a personality.  This is a fish that we are all a bit attached to, so I sure hope she sticks around for quite.  

Emma continues to get stronger each day. She still has a way to go before she is crawling, but she does scoot a lot more than in the past and reallllllly wants to get moving.  We are trying hard to teach her how to move in a crawling position and she loves that but it is evident she gets frustrated with all the effort she expends for the little movement she achieves.  It's mostly her arms that are holding her back so we are working on all different types of stretches and weight bearing to try and loosen them up a bit more.  Overall, though, she is an optimistic gal and keeps trying every chance she gets.  Although she isn't sitting yet, she is doing great at keeping her head up and using her arms more when in supported sitting positions.  This should help improve her trunk control and that will lead to more movement and maybe easier crawling.  She is also starting to make more conversational sounds, imitating more sounds and making some word approximations - all when she wants to since she is still pretty quiet in general.  All of this leads us to be very hopeful that she will eventually start talking.  In the meantime, we continue to use the iPad with the Yes and No program and I started introducing the Proloquo2go today and Emma loved it but I realized I need to take a closer look at the menus I've set up to make navigation easier.
    • Chris is still running quite a bit.  He is getting ready for the half-marathon in Philly in September, but the hot weather is making it harder to get in all the longer runs he wants.  His work is always busy in the summer and this one seems to be busier than ever implementing all the technology upgrades at the school.  
    • As for me, I continue to take lots of photos.  I've even been asked to take a few photos for friends and that is a pretty big honor for me.  I've also been trying to find a bit of time here and there for sewing.  I took a class on making tote bags and just love the bag I made even though I was surprised at how much work went into it.  I'm also excited that I am now a contributing writer to the blog Hopeful Parents and will post there once a month.  More on that next week.
    • The house has had no movement or activity.  According to our last weekly report there is a 36 month inventory of houses in our zip code.  Ouch!  So, in addition to the recent price reduction we made, Chris and I are discussing our plan B.  

    Thursday, August 5, 2010

    New York City

    The girls and I headed to NYC to visit with my dear friend Trish.  We spent the evening enjoying the city.  Julia's favorite part of NYC was Central Park and even passed up the opportunity to visit the Natural History Museum for more time on the tire swing.  Emma seemed to love walking around and seeing all the people.  We did hit Times Square and it was beyond crowded so we only spent enough time for Emma to get a good kick out of it and then headed for dinner.  The girls had their first taxi ride at the end of the evening and Julia is telling everyone about her taxi ride so I'm sure that will be a request on our next trip to the city.  

    I guess the only down side of the trip was for me - I think I got food poisoning and had to call Chris to come and rescue us.  The Amtrak train had him at Trish's apartment less than 2.5 hours after I called him with my SOS.  What a guy!  He took the girls to Central Park again - at their request - for the morning while I slept.  Thankfully, I recovered enough to make the trip home in the car with everyone but it was a bit of a rough ride.  

    Thanks to Trish for her hospitality and for taking care of the girls in the morning before Chris arrived!  We hope to see you again soon.