Help Us to Help Jack...

**This is copied from our Chipin.com page.**

Please Visit Jack's Page HERE!

Hello All!
Thank you so much for taking the time to stop by our donation page for Jack. I figure the more people that see his page, and perhaps his actual need, then perhaps the more people who might be inclined to give to him...
Let me back up a little bit, and give those of you who are new here a little bit of background on our story. Jack is our son... He is the youngest of three boys, Triplets born on June 1st 2005. Our boys will be turning 6 years old in just about 10 days... How time flies. I carried the boys to almost 35 weeks gestation, when they were delivered by c-section. Jack was the last one out, and dare I say the cutest one... He was the smallest baby, at a mere 4lbs 4oz. His brother William outweighed him 11 oz, he was itty bitty...
He was our baby boy. From the minute I laid eyes on him in the NICU, I knew that Jack was different. He seemed a bit more distant than his brothers, and I never really seemed to bond with him as well as the other two. As time passed, I noticed however that I was also having some issues with his identical brother Evan... The two of them seemed to have their own agendas, doing things at their own speed and pace. While they developed very typically, it seemed that they were developing just a little slower than I was anticipating. Their brother William seemed to set the goal standard, and then the other two boys would reach that goal nicely. Evan always second, and then our baby Jack pulling up the rear... At about 10 months, I started noticing other things that were holding my attention. William would turn his head when I would say his name, the other two wouldn't... In fact, it seemed at times that the other two had no idea that there were people in the room with them. It was really only on their terms that they would take the time to notice others.
As the boys continued to develop, Jon and I added two more children to our family. A set of twin girls were born when the boys were 13 months old. As we struggled with the daily chaos of two newborns, as well as three toddlers, things became very, well, chaotic. I tried to keep an eye on the boys development as best as possible, but truly it seemed to fall to the wayside. It wasn't until Jack was nearly 18 months old that I realized something was truly wrong. I had been in the hospital with one of the girls for an extended stay. Prior to our hospitalization, both boys were babbling a little bit, upon returning home they had become silent. I asked if anyone else saw what I was seeing, and tried to reassure myself that nothing was wrong...
Honestly though, it was very obvious. Something was VERY wrong. I contacted our pediatrician who did nothing more than reassure me that he was probably fine. I was able to contact people involved with Early Intervention Services. They assessed all three of the boys quickly and agreed with me that there was something not adding up, but nobody was telling me what was wrong. Internally, I knew. I knew the boys were autistic and I was terrified. I felt like I had too much on my plate already... There was no way that I could possibly handle this too. How would I deal with triplets, twins, AND Autism? It seemed unfair, it seemed hard, it seemed unrealistic... Not too long after the boys started receiving services Jenny McCarthy started speaking to people about her son Evan. She told people how Autism could be "cured" and how she had gone about doing it... Her son Evan, was now a very "normal" child. I was completely confused...I didn't know what I wanted for my boys. I wanted them to be able to tell ME what was best for THEM. Of course as parents, we all know that's just not the way things work.
So, over the next few months, I started really looking at my children. Not just Evan & Jack, but all of them... I wanted to see if life was really so difficult for Jack compared to William, or the Girls. When I really looked at it, I found that my boys, the ones who were afflicted by Autism... Seemed happier. They laughed more, they smiled so much... It was like someone was whispering a joke that only they could hear, in their ear, all the time. So why would I, in an effort to change them, take it all away... I mean don't get me wrong, I wanted to know the joke! I wanted them to share it with me! But part of me figured that in their own time they would... And they have...
I've loved having Evan & Jack in my life, their Autism has brought a whole new level of appreciation to our family. With having two sets of multiples, I felt that in some sense I was robbed of enjoying all the milestones that the kids experienced... Rolling over, Sitting up, first foods... But with our boys, we have been able to sit back, and relax, knowing that in due time it will come. There's no hurry, there's no timeline... And I love it. I can't tell you how incredible it was to hear Evan tell me "I love you Mommy" at nearly 3 1/2 years old. With Jack however, I'm still patiently waiting to be able to hear his words... I know they're in there. He can say it when I prompt him, but he struggles incredibly with the day to day emotions and communications.
We know he has the ability to speak, there is nothing wrong with his mouth, tongue, teeth... They're all quite perfect! He just isn't really able to link it all together yet. It's such a process for him. Honestly, I can't imagine how he must feel when he wants or needs something and his Dad and I end up playing an impromptu game of charades to figure out what it is... There are days when I'm able to figure it out almost immediately, and other days where the frustration and sadness is so apparent on his little face. We often bring the other children in on our "game" to see if they can understand him better... Sometimes however, he will simply shrug his shoulders and walk away, clearly dejected. I do NOT want that for my child. I want his needs to be met, I want his words to be heard.
You're probably now wondering what has brought us to this, to asking for help from all of you. I'm asking for help because the cost of an iPad is ridiculous and we have five children! Kidding...The main reason why we're finally realizing that this is a need as opposed to simply a "want" is because of the steady decline in Jack's behavior and performance at school. Jack has begun having outbursts that are so bad that he is hitting not only his teachers, aides, and therapists, but also himself. He has spent many days recently sitting and screaming... We as his parents have explained that we can't let him do this in the school setting and now when he acts this way, the school calls me, and often times I have to spend the rest of the day working with him at the school. Allowing him to be a disruption to the rest of his class is not acceptable, and while he knows this, his inability to explain to others what he needs has become a complete roadblock.
Recently, I found out from a friend that Apple offers refurbished iPads at a reduced price. I was thrilled about this news. Finding out however that the ONE program that he would use to communicate with us is $190, left me feeling a little sad. We've applied for assistance on various levels and have been met at dead ends everywhere. That brings me to you... We felt that this was a viable option. Jack will be able to use this not only as a communication device, but also as a learning tool in the upcoming years.
In case you're interested in looking at the primary program that Jack would use for communication it's located here. http://www.proloquo2go.com/. The awesome news is that many of the other apps that he would benefit from are not nearly as expensive, maybe $30 at most. It all adds up...

I know that with the boys birthday coming up, most of their birthday money will be going towards this one item for Jack, I know however, that the gift of their brother not screaming, and him being able to tell jokes right alongside of them, will probably be gift enough...

Comments

[LornaJane]

I'm a long time reader and first-time commenter, but I read this the other day and just now tripped over what looks like a free alternative app - posting you the URL in case it helps either you, or anyone else visiting this page looking for info. http://techcrunch.com/2011/06/17/talking-the-talk-verbally-lets-the-speech-disabled-communicate-using-the-ipad-for-free/

[katie k-h]

If I were you, I would request that for that iPad to be used as a form of assistive technology in his IEP. Try to collect data to support your argument that he needs the program. I know it won't alleviate your personal cost, but the school system could provide one for the classroom so that he doesn't have to cart it back and forth every night. It also may help other students with autism, too. There are always grants out there for assistive technology through Frederick Co. Education Foundation and other groups.

Hang in there! You are an awesome mom!

Love,

katie

[Jessica]

Hi Erin! Thanks so much for your question! Yes, the boys school does utilize PECS as a tool for helping Jack to communicate. Unfortunately we are seeing some resistance in his desire to use it now. I think alot of it is because he has been using that system since he was about 18 months old and I think its a little slow for him now. Jack is able to read quite well too, so he has that advantage... Currently though Jack uses the PECS in school.

[Erin]

Does your school use PECS (picture exchange communication system) for functional communication? I have seen it do wonders for some kids. Because it is a very low- tech system (basically picture communication cards and Velcro) it might bridge the gap between the present and being able to raise enough money for the iPad.