Friday, 28 September 2012

Grief, Hope, and Some Really Cool IPhone Apps

OK- how, you ask, can this post be cohesive with such varying topics?  I doubt that I will be- sorry about that.  I am a bit scattered right now.  I have been in crazy organization mode this week- putting together a really strict budget and just trying to get on top of things in general.  I know there are iphone apps for almost everything, but haven't really taken the time to explore very much- can't imagine why, with so much time on my hands.  I'm just gonna throw the ones out there that really impressed me this week-
Cozi- family organization- family calendar, can send automated texts to the hubs to remind him of appts, grocery list, to do list
Allrecipes- has a recipe spinner- you plug in what type of dish (ie main course), main ingredient, and prep time and it throws ideas at you- and compiles a grocery list of the items needed to make them
Goby- lists local events based criteria like date, family friendly, etc, and moves with you- ie, if you change location it senses that and gives you the events for your current location
ShopSavvy- this might be my favorite- it's a barcode scanner- you can scan any item you want to buy and it runs it through the system and tells you what local store or internet seller has the best deal.  you can also type items in, but why would you when scanning is so much stinking fun?

Then I decided to type in autism.  It's a well known fact that there are a ton of apps that are helpful to children with autism- the ipad is a coveted item among most parents who have children with autism.  The iphone is a bit tougher since the screen is small and most of these kids have fine motor issues, but I did find a couple that I will be trying:
Autism Lite- this is for parents- it helps you track supplements, diet, behaviors such as meltdowns, self stimming behavior, sleep, etc.  of course for the full monty you have to pay- the jury is out on that
Autism iHelp- basically ABA cards on the iphone screen- practical objects and such that you can go through with your child where ever you are- you can also opt for a voice over to say the words to the child
AutismApps-  this is hilarious, but helpful.  It's an iphone app outlining all of the autism iphone apps.  but seriously, it reviews them, categorizes them, etc.  very helpful

So as John would say, stand back!  I am on one of my organizational rampages.  Everything will be slow-cooked, coupons will be clipped, comparison shopping will be constant, and lists will be everywhere.  I usually get like this when I am super busy.  There are an overwhelming amount of appointments, etc coming up for the boys.  If I don't get a bit more efficient I will be drowning in a sea of gluten free fish sticks and dirty laundry.  Not that there's anything wrong with that.

Speaking of busy- today was Nate and my first "More Than Words" class.  It was really an orientation for the parents- the kids will, for certain classes, be in childcare with some of the aids that work with them in ABA.  So it wasn't quite as bonding for him and I as I had hoped- but it will be in the future.  I realized while I was there today that I felt a tremendous sense of relief.  At first I couldn't pinpoint the reason for it- was it because I was among other "autism parents"?  No, I go to my TACA meetings, talk to other parents at the boys' OT, etc.  Was it because I am hoping this will really help Nate?  Honestly, no, although I am very optimistic about this.  Then it hit me- these are allparents that are at the same stage of this journey as I am.  Even at TACA, most of the parents have older kids, they are wiser, when I talk to them I feel like I am "behind" or "naive" about the interventions.  Not that they are condescending, they are not at all.  It's just how I feel.  I guess the best example I can give for parents of neurotypical kids is what I experienced when I joined playgroup with Jack.  I went to the organizational meeting and listened as the leader divided the kids in Jack's age group between two groups- first time moms and moms with other children.  At first I was kind of insulted- why was that necessary?  I so get it now.  Now that I have two kids- finding a time to meet would be so much more complicated, playgroup would be an "extra" activity, as opposed to the absolute lifeline it was to me when Jack was a baby.  With our first kids, we all freaked about everything, now we are like, oh reflux, really?  Colic, really?  moving on....If I had been in the playgroup with the second time moms I would have felt overwhelmed and afraid to speak up.  And that's how I feel at TACA quite often. 

If anything, I have been dealing with this longer than most of the parents in this group, because of Jack.  I felt relief because I could see my hope, frustration and grief mirrored in the faces of these other parents.  One of the moms cried multiple times today, just during the introduction.   At first, I felt pretty in control of my emotions, and then they put on a video of testimonials by other parents who have been through the program.   They made sure to include children with varying degrees of autism- several who were verbal, a few who were non-verbal.  I was struck by some of the footage of the parents talking about how grief-stricken they were when their children were diagnosed.  I wanted to scream "yess!!!!!" Thank God they included this.  We ALL needed to hear it, to know that it's normal.  So many friends and family members try to comfort us- but unfortunately, many of the things they say end up making us feel worse, or guilty, or minimize what we are going through.  Things like "it's not fatal".   Ummm, yes, I know that.  I am not worried about my child dying, and I am so so lucky for that.  However, I am worried about his life- what kind of life he will be capable of living.  And that is a very real fear.  I have had people say things like "someone has to work at McDonalds", or "he'll find a skill".  This is NOT comforting.  What parent doesn't want their child to thrive?  Anyway, I digress.  I don't think there were any dry eyes when the video was over.  I have a feeling that this class is going to take on a support group atmosphere as the the parents get to know each other.  This thrills me.  Next week we will be videotaped interacting with our children individually- kind a "pre-course baseline".  They will do this multiple times throughout the course, presumably to show progress.  I am ready to get moving on this- it is quite time consuming, there is extensive "homework", both reading and specific activities with Nate.  Thus the need for extreme organization.  There- see, I tied it together for you, haha.

Moving on- Nate has continued to have a very good week.  He is pointing more purposefully, he has been more verbal.  At one point this week he started saying "hug" and then running into my arms.  Bliss.  But besides expressing himself more, I get the sense that he is understanding more of what we are saying.  "ready to go bye bye?"  He heads for the door.  And, as insulting as it is to the sitter, the minute he sees her, he now bursts into tears. We got back from class today, and when he saw that she was still there he lost it.  It took both of us several minutes to convince him that mommy was staying.  Then he was fine.  We have been reading the "duck and goose" books at bedtime.  He will now point to the "duck" on every page when I say "touch duck".  Now, I am not picky, he can point to either the duck or the goose, and that counts for me.  On one page there are three birds- now when I ask him to touch duck, he individually points to each one of them.  This is huge for him, and shows that he is not doing it randomly- he understands what I am asking.  John and I both feel that major progress is being made- I started him on some digestive enzymes this week too, hoping this will be helpful.  Keep praying for him!!!

Sorry this was kind of all over the place, but it kind of matches my mood this week.  Have a good night and thanks for listening!

1 comment:

  1. TACA intimidated me too. They recommended me to a ton of DAN doctors I could not possibly afford. So we went GFCF and found other food allergies. I later found out my son has immune system issues after all- not heavy metal poisoning. He has Epstein Barr virus and PANDAS, an autoimmune disease associated with strep. You might want to get a full immunological workup to see if he has any immune deficiencies and start testing for illnesses like strep, mycoplasma, lyme, all of the 10 herpes viruses, and any other possible illnesses that may have coincided with his autism diagnosis or regression. So many people I knew have done this and come to find out their autistic kids are just sick with several things, and treating them medically reduces the symptoms and brings their children further towards recovery. This website should have a full list of illnesses and tests you can run.