Baby Please Don't Go

The title of this post is a Van Morrison song. I am a huge fan of Van Morrison as is Emily. At any given moment she might belt out "Baby Please Don't Go" or "GLORIA". Her theatrics when singing a Van song is quite comical(I will post a video at the end). She feels the music in her body for sure.

Unfortunately "Baby Please Don't Go" reminds me of a serious, less comical issue with Emily. Separation anxiety. I can't "go" anywhere at times. She has severe anxiety and as a baby her separation anxiety was more extreme than any child I have ever known. I was assured she would grow out of it. She really never really grew out of it, although at times it was less intense. The typical ages where separation anxiety is prevalent in children made it almost impossible to go anywhere without Emily by my side. Over the past 9 years there have been countless instances where it was worse than other times. Spring break, Christmas break and summer vacation away from her normal school routine brings it out. The year that she was serviced at home due to the difficulties in school, was the best of both worlds. She was able to learn in an environment that she was comfortable with less stress. However, she became dependant on me and it was decided that if we did not get her back into a school setting, she may never be able to tolerate school. It was with a heavy heart that I sent her back. I see the benefits of her learning to be dependant on others and herself. However, as a mother it is never easy letting go especially when you know that in doing so you are creating stress and anxiety in your child.

When returning from a trip this weekend I told her I was going to unload the car. I closed the door to the garage so the dog would not get out. From outside I could hear her crying for me. Just a simple closing of the door to separate us was too much for her. People often tell me that I need the break from her. In all honesty I love having all of my children around. I don't want or need breaks very often. Today was the first day back at school after spring break. Emily is doing delayed starts to ease the transition.  So today when I dropped her off at school I wanted so badly to say "Baby please don't go", but I know it is for the best.

Emily singing GLORIA .The reason for posting this video last year was to showcase one of the funnier aspects of an ASD trait, mimicing. She had a really hard time getting the technique like she had seen. As a side note...we don't smoke.

Thanks for reading,
Jessica

World Autism Awareness Day Giveaway

To promote World Autism Awareness Day on April 2, I have planned a giveaway.

"Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness and funding can help families today."

Emily was diagnosed with Autism at the age of 3. While the diagnosis itself was overwhelming, the effects of the disorder had been with her for years. My goal during the month of April is to show the affects an Autism Spectrum Disorder can have on a family and raise awareness for kids like Emily.

I started selling Scentsy products in August of 2011 to give back to the Buddies for Autistic Kids campaign. Emily has severe sensory issues as many kids with Autism do. She received a Scentsy Buddy from the Buddies campaign for free. The Scentsy Buddy is a plush animal that comes with a Scent Pak which is placed in the zippered pocket in their back. There are eight different animals to choose from. Each animal has textured arms, legs and faces that are also great for kids with sensory issues. We use calming scents like french lavender and vanilla cream. I saw the benefits these scented animals had and wanted to give back to kids like Emily. My commission for selling Scentsy products goes straight to sending out Scentsy Buddies.

Sensory issues have been a huge factor in Emily's Autism Spectrum Disorder. I have decided to kick off Autism Awareness month with the giveaway of a Scentsy Buddy on April 2,2012, World Autism Awareness Day. There are several ways to enter this giveaway. I have set up a rafflecopter on my Blog facebook page as well as on this blog post. You can earn entries by commenting on this blog post, sharing this blog post on Facebook(entries can be earned daily), liking my Somewhere Over the Spectrum page and liking the Buddies for Autistic Kids page. The winner will be drawn via random.org on April 2, 2012. Anyone is eligible to win. You do not have to have a special needs child.

I have many goodies and giveaways planned for the entire month of April to raise awareness for Autism. Please share with family and friends!

Thanks,

Jessica

Christmas Miracle: Part 2

I was wheeled down to the NICU with a feeling that I had never known. I was about to see my little girl for the first time. It had been 18 excruciating hours since they had taken her from me. Everyone else had already seen her. As I entered the NICU the faces of the nurses is one I haven't forgotten. Their smiles reassured my growing anxiousness, but their eyes told me a different story. What I saw in their eyes was almost heartbreaking. As though they were willing themselves to show joy and happiness for my benefit although they knew what was about to happen. The head nurse of the NICU was a friend of the family and told me that she herself had put in Anna Grace's central line. I was comforted to know that Anna Grace was taken care of by someone who I knew would treat her as their own. As I was wheeled into her pod, I tried not to look at the other babies. I could see her name on the open tray as I scrubbed up. I was so close to seeing her but had to spend what seemed like an eternity washing my hands to prevent germs.

When I finally reached her, I was not prepared for what I saw. It literally took my breath away. My eyes were fixated on her tiny body. After I broke my gaze, I sobbed. The type of sob that reaches down into your belly and feels like your heart is being ripped out. Her skin was transparent. I could see straight through her. There were wires and cords bigger than she was coming from her body. She was on a ventilator so her mouth was covered with tape. She looked like a baby bird just hatched. I wanted so badly to pick her up and just hold her, but because she was so premature she needed minimal stimulation. Too much physical contact(even from her mother)could be harmful to her. I did reach out and touch her ever so gently with one finger. I had to have that bonding. She was just a little longer than a Barbie doll and not much bigger. There are so many things that are not yet formed yet on a 26 week gestation baby.

We were told that the first 72 hours were critical. Every day after that her chances of survival would improve, but there were no guarantees for her future. There were insurmountable odds against her. Brain bleeds, blindness and organ failure were just some of the things we prayed God would protect her from. The day she was born, our Preacher came and prayed over her. He came almost every day for an entire 2 months. It gave me such peace when I would visit and see one of Brother Billy's cards taped to her isolotte. We were told if she survived, we should accept the fact that she would have some sort of disability as a result of her extreme prematurity.

Anna Grace stayed on the ventilator for 2 weeks. Her weight dropped to 1 lb 8 oz but she remained strong and eventually gained minute amounts daily. She was anemic and required several blood transfusions while in the NICU. Aside from that she was remarkably healthy. She graduated from the open tray to an isolotte within a month and started being fed the tiniest drops of food through a tube. She tolerated most feelings. That was another hurdle that we passed. As her weight increased it was time to try the bottle. Preemies have difficulties trying to suck and breathe at the same time. It is a slow process for most. She did fabulous and soon she started to fatten up. As her weight increased she was moved to an open crip to try and maintain her own body temp. After 2 months in the hospital and a month before her due date, we were told she was strong enough to go home. We roomed in for the night to make sure we were capable of attending to all of the needs premature infants have. Check body temp every 3-4 hours, maintain monitor for apnea, feed and diaper as usual. We brought her home on Valentine's Day 2000 weighing 4 lbs 4 oz.

She was diagnosed with Sensory Processing Disorder(Called Sensory Integration Dysfunction then) when she was 18 months old. She received Occupational therapy until she was 4 years old due to sensory issues as well as fine motor delays. She outgrew both by the time she was 6 years old.

Over the past 12 years, I have been amazed at her growth and so thankful to God for the miracle she is.

Thanks for reading,
Jessica

Ellie's Games Review

I found Ellie's Games on facebook. Erik Bye had been very generous with A4cwsn , an online special needs community, in providing app codes of Ellie's Games to be given away on their facebook page. He quickly became a community favorite developer. It was not until he guest hosted the A4cwsn page for a day that I got to know his apps better.

About Ellie's Games
My daughter has inspired me to develop child friendly iOS games. Simple intuitive games focusing on the basics: Eye-hand coordination, color recognition and fine motor skills. Every game is throughly tested by our Quality Assurance team (Ellie) and must be approved by our business management team (Ellie).

Ellie's Games has 8 apps to date. I was fortunate enough to win a code for Alphabet Dots during that time and I bought Math Duel to help Anna Grace with math. Ok...really so I could brush up on my basic math skills. I was impressed with several aspects of those two apps, so when Erik posted a request for Bloggers to review his apps, I did not hesitate to volunteer. Erik provided me with codes for Color Dots, Color Squares, Counting Dots and Rain Dots. He also made his newest app Dot Collector free for a limited time in in honor of its release on 2/29/12.  Color Dots is the most popular with 20K+ downloads.

One of the first things I noticed about Ellie's Games is the vibrant color scheme that is used.

What kid wouldn't be engaged by those colors? The simplicity of Ellie's games is another great feature. They are simple enough that any child can use while still reinforcing and teaching core skills such as hand-eye coordination, color recognition, and fine motor skills. With that being said, Ellie's Games are challenging enough for Luke at 5 and Emily(ASD) at 9. Alphabet Dots and Counting Dots have been really helpful for both Emily and Luke.

I let Emily decide which app I would review and she chose Counting Dots. Counting Dots is available in the iTunes store for .99. There are a few choices in settings. You can remove the dot border, pop sound and pop vibrate(on the iPhone). Luke loves using the pop vibrate on my phone. I personally think the border is helpful for Emily when playing Counting Dots on her iPad as is the popping sound. This game is challenging for Emily as she has to focus on counting numbers in sequence. A skill that we are still working on. The iTunes description says it is  "Helping kids count from one to one million!" We personally haven't gotten to a million yet but I take Erik's word for it. When tapping the dots, if you tap an incorrect number, that dot will shake letting the child know it is not correct. When the correct number dot is chosen they get the rewarding popping sound. Once a sequence is achieved a new screen appears with more number dots. No levels awarded or times to beat which is important for Emily's confidence in working on math skills. Overall this is a fantastic app that I give a 5 star rating in iTunes. Here is a short clip of Emily playing Counting Dots.

 Please go "Like" Ellie's Games on Facebook and check out elliesgames.com. I have links to the apps in Itunes below. Please check them out and if you purchase any don't forget to leave a rating and review in iTunes
Counting Dots
Dot Collector
Alphabet Dots
Color Dots
Color Squares
Rain Dots
Color Sliders
Math Duel


Thanks,
Jessica

Emily's iPad

Emily has had her iPad for six months now. We have seen tremendous improvements in all areas of growth and development since then. We use the iPad to lessen anxiety, teach academic skills and encourage her fine motor progress.

Before the iPad we used traditional social stories to help with behaviors related to anxiety. Like many kids with an Autism Spectrum Disorder she does well when social stories are presented prior to the event. Emily also relies on Social Stories during anxious times. There was a period of time when transitions in the car were difficult. It was hard for me to comfort her while driving. She is unable to read so the social stories were ineffective at those times. One of the first apps we got for her was Speech Journal. It is an inexpensive app($3.99) and gives you the option to add personal pictures as well as record your own voice. This has been one of the most effective apps for decreasing Emily's anxiety. She is able to access it by herself  while traveling in the car or when I am not around. We have social stories about the Dentist, Riding in the Car, Hitting, etc. Another app that has been helpful is Sosh. While it is for older teens with Aspergers to help with social situations, Emily likes the relaxation techniques(Deep breathing exercises). This is an expensive app($39.99) that I was fortunate enough to win, but would not buy for Emily.

We also have several apps that are helping with fine motor skills. One of Emily's favorite apps is Dexteria . This is an inexpensive app($4.99) that is very beneficial. Interestingly enough it is also the app with the least amount of bells and whistles, but it is engaging for Emily as well as Luke(5). One of the most lucrative kid apps out there is Injini. This is an amazing app well worth the $49.99 cost. I won this app through the A4cwsn facebook page. There are many skills this app works on; fine motor and language skills, understanding of cause and effect, spatial awareness, memory and visual processing.


Some other apps of interest from Emily's perspective are Toca Hair Salon (All Toca Boca apps are fabulous and inexpensive @ $1.99), DTT Words  (ABA based approach to sight words $2.99), and  My PlayHome ($2.99). I have two app developers that I will be doing blog reviews for next.  Ellie's Games and Software Smoothie's not yet released app, Felt Board.  I am very excited about this opportunity and hope to spotlight some of the fabulous attributes of these apps and their developers.

Thanks for reading,
Jessica