Worth It

You know, when I signed Nathan up for Cisco Center initially, it was because I needed daycare, and because they were a special needs facility.  And Nathan liked it fine, he was always ready to come home in the evenings, but I think that's a good thing.  Everyone seemed nice, and I have been happy with my decision so far.

For the past week, Nathan has been going to Cisco for full days as his ECI class is out until extended school year starts on July 8th.  I have been very stressed out about the money- it costs $500 a week to send a child there full time.  And as I expressed to Cisco, who runs the center today, I get why it costs that much.  My child needs more individualized attention, he needs sensory stimulation, he needs many accomodations.  I mean, how many places have multiple swings upstairs, and an OT and speech therapist on staff?  Cisco Center is also meant to be more of a school than a daycare, so that also justifies the cost. They have a curriculum, and they have weekly themes.  I know that when Nate comes home with sand in his hair it's beach week!  It's just that constant dilemma of special needs children needing so many things, and these things being more expensive, because, well, they need to be.  It is going to be very difficult to keep Nate in this situation for the summer.  I have applied for grants, but won't know the outcome until probably August.  Today Cisco suggested sponsorship, asking people to sponsor Nate for a certain amount each month- it's a tax deductible/donation type situation.  But while it sounds like a great idea in theory, everyone has expenses and I just don't think it's very realistic right now. 

Here is what I know.  He LOVES it there.  John and I are both pretty sure that he was trying to say cisco this morning multiple times, and at one point we heard "fun" in there too.  Yes, this is the morning after I was talking about his regression.  I know.  Almost every day I pick him up he is soaking wet (with water)- at first I was like, what??  But really this is because they are providing him with the sensory play that he craves and needs- outdoor water play.  I know how Nate is- came downstairs from putting him to bed tonight and found my water glass on it's side and water all over the floor.  I didn't wonder for one second how that happened- he's my water boy, loves to watch water pour, move, drip.  It's a visual stim for him.  They made "donuts for dads" this week.  When I dropped Nate off this morning, he walked right over, sat at the table and was given the task of "shaker"- shaking the cooked donuts in a bag of powdered sugar to coat them.  And the bag was labeled "gluten free", so he only had contact with the gluten free donuts.

And these are just the benefits for him.  Last Friday he and I attended the end of year party at the center.  I met many of the parents of the kids in Nate's ECI classroom.  Made connections that will likely be very important for him and for me.  Connections with other moms that are walking in shoes very similar to mine. 

Cisco contacted myself and several parents a few weeks ago asking us if we would be interested in testing a communication app for children with autism.  The software developer had contacted him, I am guessng because it is a designated special needs center.  The requirement to do the testing was to have an ipad, so I said sure.  Unfortunately, it needed to be an ipad2 or newer, and ours is a 1 (which is perfectly fine for most of the apps we use) so I told him we were out.  Then the developer comes back and says he will loan me a new ipad with retina scan while we are working with the software and then donate it to Cisco center.  Several moms and I spent about an hour and a half walking through the app today (it's not on the market at all yet), not just learning how to use it, but offering the developer suggestions on how it could be made more user friendly and relevant for our children.  It was pretty cool. The other cool thing was that when I started offering suggestions, the other moms were nodding their heads and agreeing. For instance, there were about 200 possible things a child could find and touch in order to communicate their needs.  I was sitting there thinking that this was way too much for Nate to sort through right now, that he needed one screen of maybe 10 things at most.  When the other moms agreed, it made me realize that in this center, Nate is not "the most behind".  He is truly with peers.  And that's a very unique thing to find a mile from your house! 

So somehow, we are going to make this happen for the summer.  Don't get me wrong, if the grants come through, our net cost will not be horrible, it's just the upfront cost that is getting us.  But....I have never seen Nate excited to go somewhere before.  I have not seen him in a situation where he really seems to belong before.  As a parent of a special needs child, this is priceless. 

Nerves

Tomorrow begins a new chapter in our lives.  I am taking Nate to "daycare" tomorrow.  And I am a bit of a mess at the moment. 

I know it's the best thing to do for him- to have him in an environment where the people are trained to help him.  But this mama can't stand the thought that he will be confused and scared initially.  And he won't have any way to communicate that.  Other than screaming of course. 

Eventually, I will likely begin to enjoy having a little bit more freedom.  Working full time from home and having the kids in the house is definitely advantageous in many ways, but it also takes away many of the positive aspects of working as well.  Such as the time for one's self, the ability to run errands, the privelege of being able to focus on work.  I am very proud of myself for handling this particular juggling act for so many years, but the truth is, it has made me a little bit crazy.  My husband just doesn't understand how I am constantly planning my next 15 moves- everything is mapped out, continously reassessed, and mommy is, well, she's tense, all the time.  There is no other way to accomplish what I have been doing.  Or at least I haven't found one.

I will be driving Nate to daycare after the bus drops him off tomorrow, mainly because the new bus stop is not yet "official" for him, that can take awhile.  I am dreading leaving him.  I have really loved our lunches and I will miss him so much.  I just never thought I would be packing my three year old a lunch, or putting him on a bus for that matter.

On a positive note, we have been working with Nate on the 3D shape sorter ipad app for about a month.

http://www.realkidsapps.com/games-12101101/

Tonight it was like a little light went on in my boy's head.  He has been moving the shapes over, but I have been having to very actively direct him on which shape to try, when to turn the cube, etc.  Tonight he was suddenly figuring it out on his own, and attempting new shapes when I would just say "uhoh no go".  He was definitely basing it on matching the outline colors as well.  He kept restarting the app when he was done, he was having fun.  And eventually he started saying "uh oh no" with me, or something close to it.  All of this for a little bit of confetti when he finishes.  Really really cool to watch the wheels in his head turning.

Our New Tools

Quiet weekend here, although that's not how it started out.  Natey and I spent Friday evening at an urgent care center after he woke up at 4pm with a REALLY nasty ear infection.  So now have added antibiotics to the mix, but he has improved rapidly and seems to be a pretty happy camper today.

I have tried to spend a fair amount of time doing some enrichment stuff with the boys this weekend.  We have been trying out apps on the IPAD and we have found a few that both boys seem to really enjoy.  Nathan is getting in on the action- there is a shape sorter app that cheers and throws confetti when you get the shapes in the right spot, and he seems to dig this.  We recently purchased the chair and tray that his home visit therapist uses, as it is a great way to help him focus.  I have been putting him in this and working on the shape sorter there.  It really really helps.  Here is a pic of the contraption:

Probably the biggest thing we are using the IPAD for right now is to improve Nate's communication.  I downloaded an app called My Choice Board and it seems to be pretty user friendly.  It is basically a PECS (picture exchange communication system) that is digital.  The advantages of this are many- you can't lose the cards your kid needs, you can change them as frequently as needed with very little effort, and rather than with most PECS programs, you can use actual photos instead of a nonspecific picture of a toy.  This is important because Nate is really not able to generalize objects yet.  For instance, if he wants HIS ball, he will need a picture of that exact ball in order for him to understand what he is asking for- not just another random ball.  Obviously the goal is to get him to generalize, but first he needs to identify objects by name consistently.  And we are not there yet.  I am making each "board" only 2 or at the most 3 choices, as I don't want to confuse him.  Another handy feature is that you can record your voice naming the object, so that when the child touches the picture they hear mom's voice saying it's name.  We are just familiarizing him with the program at the moment, I am really really hoping this helps him communicate his needs and decreases his frustration.  He wanted chips today (he loves tortilla chips with a passion) and when I told him all done he proceeded to hit me about 5 times.  I repeatedly grabbed his hand and said no hit, but he was really ticked off and would start again if I let go.  I DO NOT want to go down this road with him- how do you discipline a child who has such limited comprehension at this point? 

Anyway, the apps we are using most with Jack are fine motor related.  There are many cool apps that work on letter formation. Jack has always had issues with this, one of the major problems is that he refuses to form his letters "correctly".  He often insists on doing it backwards.  These programs will not allow that, physically they won't.  So he is forced to do it the "right" way.  There is one app called "sky writers".  It consists of an airplane that he moves along the outline of a letter- when he does it correctly a trail of clouds follows the plane.  Yes, I'm serious.  VERY effective.  There is another app which we haven't actively used yet called choiceworks- similar to pecs in that it uses pictures, just in another way.  It's a picture schedule.  Something that will benefit Jack greatly- it will help ease his anxiety by showing him what's coming next.  I plan to try it first with our morning routine- I want to see if it can help decrease the number of tantrums he has before school.  Right now I would say he usually has about 4 before he walks out the door for the bus at 8:40.  Waking up, taking supplements, getting dressed, choosing breakfast, choosing a program to watch before school, and then the usual meltdown when I tell him it's time to leave.  I guess that's more than 4.  The program also has a timer- I think I will set it for the last 10 minutes before it is time to leave to see if it helps him "get ready".  Fingers crossed

As with all "interests" with Jack we have to be careful with the IPAD.  He could easily get obsessed with certain things.  For instance, we have this animal identication program for Nate- but Jack is obsessed with horses and if we let him he will sit there and hit the horse picture until the cows come home (ha).  He is also getting really into the wii- air games of course.  Mommy cannot deny it, she too is obsessed.  It's FUN!  Of course we have different goals- I am trying to find all 80 destinations, and Jack continues to look for unique ways to crash.  But he is evolving- he has figured out how to land the plane without crashing it on the beach and in the water (it's a seaplane).  Back to his fixations though- the game takes place in a cluster of islands and at one point a humpback whale popped out of the water.  If you recall, this is a past "area of interest" for him.  He proceeded to beg me to play the game for him over and over again until we could find the whale....again and again and again.  I had to nip that in the bud after a bit.  Despite this, I can honestly say that this game is great for his fine motor skills and his focus.  Landing on the water takes some serious manuevering- and so does crashing into a specific window on a building.  So that's progress.