Amazing and Grateful......

Hello all! So much to report today.

If you remember from our last post, there was a bit of drama going on in the Special Needs Community in the last few weeks. Serious drama - that involves missing awards, money, and the police.

Par for the course, when things get tough, Special Needs parents and friends get tougher!  If you remember, I told in the last post how several parents and some of their friends were trying to figure out a way to get the families who "won" that giveaway, their iPads. Enter Mission: iPossible!

We are grateful and humbled to announce that Christopher was selected to receive the FIRST iPad that they were able to obtain!!!  It has been sooooooo hard to keep it a secret this week. We are beyond thrilled to have received the iPad. Christopher is not too sure what to make of it, but was VERY happy to find the entire 1st season of Blue's Clues installed as a reward. LOL! As I have said to part of the Mission: iPossible Team, thank you just doesn't seem  enough.

I know that these folks will work hard to try to verify the original winners and obtain iPads for all. I know they are going over and above to make SURE that people know they are on the up and up. I HOPE that they are all able to have sweet, sweet dreams knowing that they have done God's work here. We also want to thank the other WINNERS for their prayers and gracious comments throughout all of this. Many asked or commented how happy they were that Christopher was the first awardee.  That means the world to us.  It also means that we will be helping to do what we can to make sure the others get this chance as well!!!!  :)

I know that sounds crazy, but we really had no other way to obtain an iPad. Christopher's will be used more as a communication device, to help with homeschooling, and to record therapy and doctor's visits without having to drag a bunch of paraphanalia along. This isn't the be all, end all to homeschooling or communication - but it frees up DME money so that we can get things like a stander or gait trainer.

As we stated in an e-mail to Mission: iPossible Team, Christopher has already shown that he knows more than he has previously let on. I should back up a bit for the new folks here. Christopher, in addition to Down syndrome, has had one or more strokes, heart defect, Infantile Spasms, and has crashed many times ending up on the vent. All of this has caused a considerable amount of brain damage - between 40% and 60%  - according to those in the "know".  We have been told that he SHOULD be in a persistent vegetative state because of the way his brain looks. Obviously, he's not. We are in uncharted waters here. Christopher is smart (I'm not just saying this because I am his mother. Ha! Ha!). He is smart enough to know NOT to let us know everything he knows, because it means more work for him!  The iPad helps us break through that barrier.

We also took the iPad along to therapy and his neurologist appointments today. It kept him entertained (doing "school"), served as a camera and video camera, AND his neurologist was so impressed! It was the closest I have ever seen him to crying. :)

So once again - THANK YOU, THANK YOU, THANK YOU!!!  If you would like to follow along, or if you would like to see how YOU can help, head on over the the Mission: iPossible blog.  You won't be sorry that you get involved in this one. :)


Keep an eye out for more pictures and videos of Christopher using his iPad and other devices!!!  Thanks!

Hugs!

Steph and Christopher

BTW - This gift means even more to us know that it came from a firefighting family!!!! Pretty much everybody on my Mom's side of the family have been firefighters. My Grandpa was Assistant Chief in our town. Thank you again!

That's All Folks!

If you look a few posts back, you will see that we were excited to announce that Christopher had won an iPad2 and $500 worth of apps. If have been anywhere in the Special Needs community lately, you know that the worst kept secret around is that this entire thing was a mess.

Mike, the author over at Marissa's Bunny, was the mastermind behind the whole thing. Frankly, I'm too tired to speculate WHY he did it, or the ins and outs of the whole thing. I am leaving the link to Marissa's Bunny over on the side of the page. You can go and read if you are interested.

What we DO know is that this person had no business collecting money on any body's behalf - let alone a charity that ended up not existing. We also know that at least 40 Special Needs families have been affected by this.

Forty families, like us, have planned therapy services, education plans, and even the chance to hear what their child is thinking on getting these devices. For us, we planned on using the iPad instead of purchasing a communication device that costs between $6000 and $10,000, depending on accessories and software. We have a limited amount that we can spend on Durable Medical Equipment per year. Those things include standers, AFO's, Gait Trainers, Communication Devices, Bath Chairs, Etc.

Because Christopher is doing so well in his rehab after his surgery, we have a LOT of equipment that is needed. Equipment that we never thought he would use. Now we are faced with deciding what we are going to do this year - get him standing and potentially walking? Potty training? New Special Needs Car seat? or allow him to communicate on his own for the first time in 7 years?

What ever happens, Christopher will get what he needs in the end - legally! We'll figure it out and move on.

As for him, there is an investigation on-going. We will let the authorities do what they are going to do. I have to assume that his life is going to be not very pleasant in the near future. He will be looking over his shoulder for awhile yet.

If you want to read more about it, you can go on over to Love That Max. Be sure to read the comments section, as it includes comments from Mike himself and a copy of the last e-mail he just sent trying to distance himself from the situation and confirming that there are no iPads.

If anybody out there reading this and was one of the original winners of the iPad, please head over to our friend Heather's blog, Little Wonders. She and a few others are going to try to get these kids what they were promised (the iPads), but they need verification of the winners.  Even THAT has come under question.

This has been going on for many weeks. I have gone back and forth from being mad to hopeful, to suspicious, now just plain disgusted. There are lessons here for all, and opportunity for many others. It is still a sad day in the Special Needs community to think that one of our own (if he IS the parent of Marissa), has targeted our own community for a scam and used his kids to do it.

Stephanie

Win a free iPad!

Go NOW over to Marissa's Bunny blog and enter for your chance to win a free iPad!

If you have never been, Marissa's Bunny is a blog by a Dad and is dedicated to his daughter who has infatile spasms.

Marissa's Dad is strarting a foundation, also called Marissa's Bunny Foundation. This is a merrit based give away, and ANY special needs child can benfit. Dad's bosses have genrously donated 5 iPads to give away (awesome!). 

So run on over and leave a comment and/or send an e-mail.  Good luck!!!

Hugs!~

Steph

Speech....

We have been working A LOT with Lil Man's communication lately. I say communication because, just like everything else in our lives, we use a jumble of different things to help him get his point across. He vary rarely has an issue letting you know when he is frustrated or just not happy with something. :)

We have been taking him to Rehab Institute of Chicago for Augmentative Communication Therapy (Roger Ebert also goes here - same clinic). He has only been twice, but already he is showing soooooo much improvement! The last time we were there, they told us we didn't have to come back for awhile. They have given us a modified PECS system to use with him. He has 4 or 5 laminated sheets hooked together with a ring. On each sheet, there are 8 squares, each with a different picture in them. Some are his favorite toys, one is a kleenex (I'll explain that in a minute), others are action words (watch T.V., throw a ball, etc).

The goal is to go through each square and look for SOME consistent reaction from him. Ideally, he would either sign yes or no, or point to what he wanted. With him though, we don't always get that. If he is overwhelmed, you will be lucky to get eye contact. So, we go through each square and look for a reaction. The Kleenex is purposely put in there to check and see if he is just giving a reaction to get you out of his face. So, if he really wants his toy, but reacts on Kleenex - he gets the Kleenex. It weeds out the behavioral control issues from true commuication skills. Not that behavioural control is not communication in itself. Its a little confusing. Sometimes his behavior is the only thing that he has control of in his world.

I am going to be working on getting some new sheets put together.  There are several programs out there for this, but I think it will be easier to take a picture of what we are targeting (specific toy, HIS bed, etc).  Obviously, there are some things we can't take pictures of.  I have lots of pitures of the signs for those things (i.e. hurt, want, all done, etc)  I think I will use those.  It will also reinforce his sign usage. 

They have commuication devices that do the same thing.  When you bush the button/picture, the device "says" what the picutre is.  There are several types out there from simple 1 picture ones to 20 picture or more ones.  Like these.  If you went to the link, you will see they are also very pricey.  Our insurance will help cover one device every 5 or 6 years.  So we have to anticipate what Lil Man's needs will be 5 or 6 years from now. 

The therapists have tried several of these devices with Lil Man.  What they didn't realize before we started trying them out, was that Lil Man doesn't like too many toys that aren't push button/feedback toys.  He likes lights and music especially.  He doesn't seem to care too much for action (like robots, etc). I think it is too hard for him to track.  If left to his own devices, he will self stim with most of these toys.  Anyway, he mastered all but the 20 picture device in a 30 minute session....ahem.

That means that the next step is an actual computerized device.  This will last MUCH longer, is customizable, and also MUCH more expensive.  These are the ones we are looking at.  They kind of look like a huge iPhone. 

We will still be continuing with regular speech therapy.  He does have a few words, and those he does have we would like to be clear to others when he says them.  I don't know if he will ever be able to eat by mouth.  Not so much because he physically can't/won't do it, but because of the reflux.  Have to protect those lungs!

One obstacle that we have to overcome is his brain damage.  This is an ever present demon with regards to his abilities.  On paper and on his MRI's, EEG's, etc, he should be in a persistant vegitative state.  He is literally missing AT LEAST half of his brain matter.  Beacause the O.B. that I had deleted every...ultrasound...the night he was born, we have no idea what he started with.  We don't know if his brain had formed normally and this is mostly stroke damage, or if it formed incorrectly from the get-go and more damage was done from the stroke, crashes, etc.  Either way, he has stroke damage, damage from thousands of seizures, damage from poor perfusion, damage from crashing so many times....Lots of damage through out his brain.  It is VERY obvious to anybody who meets or examines him that he has "re-wired" himself.  There are entire chunks of brain missing that "should" be controlling specific things - i.e. speech, emotion, etc. 

He seems to have a full range of emotions - he is not "flat", doesn't have rages, etc.  He has normal temper tantrums, but they are few and far between and don't last long.  Recognizing others' emotions is a developmental milestone that we haven't reached consistently.  He uses about 10 signs consistently.  He uses about 10 verbal words consistently, but if he learns a new one he will drop an old one.  Every once in awhile he will "parrot" something VERY clearly and may repeat it ten times within an hour.  Come back and ask him to say it the next day, and you will never hear it again. 

He does comprehend most of what is being said to him. If he didn't, he couldn't give you the "evil eye" and do exactly the opposite of what you are asking!  Expressing his wishes without prompting is an issue.  I have done a lot of research on speech, reading, and learning patterns of people with Down syndrome.  For many, speech "kicks in" AFTER starting to learn to read.  We don't know if those typical learning patterns will hold true for him.  "Typical" is NOT a word that applies to us very often!  :) 

This didn't start out as another long post, sorry!  We will keep you updated as we progress.  We welcome any and all ideas that you would like to pass on to us!  Thanks for stopping by! 

Hugs!

Steph

Heading Out

Lil'Man has appointments both Monday and Tuesday in Chicago. We are going to stay overnight, but we are driving outside the city to Monet (sp?), IL to stay at the hotel. His appointment on Monday is early (yeah!) @ 9 a.m. He sees Dr. Suskind, the ENT. We just love her but the appointments take soooo long. Hopefully, it will not take too long since it is so early in the day.

I expect she will have to clean his ears out and pull out the one tube that we know is in the ear canal. Then he will have hearing tests, and then go back in to see her again. I am going to talk to her about Speech Therapy, since we are doing the others up there, and getting a communication device. We HOPE it will be covered by insurance, but that is always a toss-up. We like the Go-Talk 20 to start out with. If this is a device that is only covered once every 5 or 6 years, we will probably have to go with something that can expand more - something like this which is more computer type. There are hundreds out there - each more confusing than the next. We pretty much expect that she will want to put in a new set of tubes. He also scratched his nose and now has some sort of infection going on. We will be asking what to do about that.

I feel like I have to address something here. I have already had a few comment from people when talking about this. We are NOT giving up on Lil' Man talking. However, the longer he doesn't, the harder it is going to be to get him to speak for it to be intelligible. We are still working on sign language. We have to remember that he has had significant brain damage, just at the part of your brain that deals with speech. He may be having raging conversations in his head, but not be able to get anything out. If those connections aren't there, it doesn't matter whether it is sign language or spoken word - he may not progress. The one thing with the communication device, especially this one, is that is is simple enough not to overwhelm him AND since he loves all toys with buttons, we think he would like this too. We HOPE that it will get him over that gap where he can recognize an object/action and push a button and actually GET WHAT HE WANTS! Can you imagine how empowering that will be? I would LOVE to know what is going on in that little brain of his, but until we figure a way to allow him to communicate fully with us it is never going to happen. Ok, now back to the original train of thought. LOL!

Depending on what time we get out of this appointment, we plan on going to either the Lincoln Park Zoo or the Chicago History Museum. It will depend on the weather, and how Lil' Man is feeling. I know Sr. REALLY wants to go to the History Museum. He is into the World's Fair and just the general history of Chicago. They also have an Abe Lincoln display that is only there until mid-August. Mondays are free at the Chicago History Museum and Lincoln Park Zoo is always free. We like free!!!!! :)

Tuesday is the appointment at LaRabida with the Dr. Thornton. She is the Medical Director for Peds and Adolescent Rehab, Rehabilitation for Kids Rehab. We are not sure what they are going to do - if it will be a full-blown PT/OT assessment, or just get the ball rolling. I am excited about this.We really NEED to get some things going on this front. Not looking forward to the drive, but if that is what it takes....... This doctor also works closely with the Orthopedist that Lil' Man sees. I hope that this eliminates a few appointments. Maybe they can tag-team over at LaRabida.

We can also schedule his wheelchair to be re-fitted and adjusted. I hate not using it - it was soooo expensive, but that thing is just so dog gone HEAVY! It takes two of us to lift it in and out of the van. If Dad is with me, he can't lift - so..... I will also talk to them about getting a script for those fold-up ramps to put the chair in the van. The worst they can do is say, "No" right?

Please e-mail me if you are having trouble viewing anything on our site. There has been some trouble with Blogger, and we are trying to get it resolved.

Have a great weekend!

Steph