Gearing up for Camp!

Dominic starts daycamp Monday at the YMCA closest to us.  I'm sure he'll love it, and i'm hoping he'll do well.   In preparation, i've made a batch of gluten free granola bars - since they'll burn a ton of energy, and created a note for the counselors... its below.   Its huge for us to feel like he's at a place where he'll be safe at the Y camp, but still, they're going to have to be accommodating (which they've agreed to already)

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Things that The Y Camp counselors need to know about Dominic.

~  Dominic has an Autism diagnosis, but his primary area of trouble is speech. He’s very low verbal.  He can do 1-2 word statements, mostly around his needs, but is virtually non conversational.  

~ While he does not have a lot of the behavior issues associated with Autism you may see some self stimulatory behaviors (spitting and growling are the current ones) and some self injurious behaviors (lately, this has been in the form of pinching or biting his own hands/arms, or hitting his head).  Unless another child is actually being impacted, the absolute best way to handle any Stim’s or SIB’s is to give them zero attention.  You can redirect him, or you can simply ignore it.  He’s doing it in a large part to get attention.   If another child is being impacted, you need to redirect Dominic, generally gross motor imitation is the most effective redirect (ex – say “Dominic, do this” followed by clapping or jumping or knocking on the table)

~ Dominic is allergic to Gluten, Dairy, Soy, Peanuts and a variety of legumes.  You are NOT to allow him to eat anything that we did not send from home. In his lunch box, you’ll find snacks (2) in the front zipper pouch, and a large lunch in the main pouch. It is iced and will be fine without refrigeration, and does not need to be heated up.   He can drink water, please do not give him juice / milk / soda / sports drinks.

~ Dominic has not had elopement issues in a while, but should he elope, please note that officially chasing him will make it a game, and try instead to have an adult fairly nearby (eg close enough to grab rather quickly) when you are not in an easily contained area.

~  Dominic will need some support from counselors for the following:

-          tying shoes

-          taking off a wet swimming suit

-          Anything fine motor (handwriting is a huge struggle, he cannot write his name on anything)

-          While he is completely independent in the bathroom, and will tell you when he needs to go, please remind him to wash his hands. He gets excited and forgets.

-          If questions are being asked (eg, in a group introduction time) – he’ll need some prompting to say things.He knows his name and his age, but he could very well be quite shy about saying them.

-          For gross motor stuff (structured outside play), he’ll catch on quick, but will need some patience.

~ You will see a safety pinned item inside his shirt. Leave it there, please.  Even if he asks for you to take it off.

~ Regarding Swimming:   Dominic loves the water and will probably BEG to go swimming as soon as he realizes it’s a regular part of the program.   Being it water is very calming for him, and he does not like to get out.  He has some rudimentary water ability – but we have not had access to a pool for him regularly in about 2 years, so how much is left, I’m not sure.  

quick update and funny story

Colorado Springs has a massive fire licking at our western edge.  We are personally fine.  I'm working from home as my office building is in the mandatory evacuation zone, and Dominic had an extra day off today while Alpine scrambled to find a backup location as they also are in the evac zone.  So he'll be back at Alpine tomorrow (the old locatoin on the Mt St Francis grounds).  We've been staying inside because air quality isn't great.  Our home is in no danger from this fire.

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So, this evening Dominic was about 20 minutes into his post bathing water play when, from the room across the hall, we heard

"Shanti Dirty.  Wash Shanti.  Mess"

And the dog was NOT in the bathroom with him, but apparently he decided that Shanti needed to take a bath.  So I called him into the bathroom, got him in the tub and Dominic poured water all over him with his watering can (no, i am not kidding).  While the poor dog stood there looking at me like "Really, again? a second bath in a week?", we soaped him up and rinsed him off.

Then Dominic said

":Shake it, Shanti, shake it?"

and Shanti shook.  I dried him off, dried Dominic off, and put him to bed.

it was cute.

Thats just funny

The setting:  Dominic is at the table, eating pasta (GFCF, thank you very much), with his baggie o farm animals sitting next to him.  I'm in the next room.

I hear
"mmamamamamamamamammmy"

I go out and say "Whats up"

And he says " Cow eating. Hungry MOOOOO". 

And proceeds to dip the small plastic cow's head into his pasta.

He just wanted me to to know he was feeding his hungry animals.

A visit to TRU that actually wasn't bad!

Toys R Us is not my favorite store, but its the closest toy store to us and not nearly as annoyingly crowded as Walmart or Target. We had some birthday gifts to pick up for a party this afternoon, so Dominic and I went over to TRU.

he did SO well! He stayed beside me, without holding a hand the Entire Time we were looking for specific things.  He found something he wanted pretty much immediately, and picked it up (which was fine, I told him he could have 1 thing).  Then we located the squinkies, and the set of Cars squinkies caught his eye, so he picked that up too. I told him he had to pick between his two things, and he picked the squinkies.

Then we were in another part of the store, and he saw a couple of wooden CARS figures that he wanted.  So i made him pick again, and he picked the cars.  On our way to the cash register, he got a bit distressed, and said "i want mcqueen".  Okay, so we went back to the place we left the squinkies and swapped the cars out for the squinkies.

No tears, no drama, no running off...

Then at the cash register while we were waiting, he did the funniest thing (I have my car keys clipped to the outside of my purse these days, which is a cross body bag).  He reached around me one way for my keys, then while holding them there, reached his other arm around the other way to transfer them (still attached to my purse) to that hand.  Then he tried to use my keys to open his package of squinkies.

Ramblings

The autism parents community is REALLY fragmented, its kind of difficult to watch.  You'd think everyone could just get along.  Without all this infighting, we would be a force to be reckoned with.

I get frustrated alot with the "neuro diversity" crowd - the ones who think that Autistic kids are not sick, they're a new deviation of normal and should be celebrated and supported.   I am clearly in the BioMed Warrior Mom camp.  My kid is sick and we're doing everything we possibly can to help him recover.

(An aside... its funny, when i first started this blog, I spent a lot of time over at Hopefulparents.org - reading about parents of children with all sorts of disabilities from a perspective of giving hope.   I haven't been there in months.  I now spend that time over at the Thinking Moms Revolution.  I've clearly evolved)

Today alone I read two blogs about the divisiveness in the Autism community - both are worth reading.

First, from a blog i've frequented for years:

"While I believe autism is born of environmental injury, I also believe there is more going on than meets the eye, on a spiritual level. I believe souls are more powerful than we give them credit for. I believe on a soul level we all know what we are getting ourselves into. My daughter is powerful. My daughter has been my greatest gift. She has transformed me in every way. She has made me a better person. She has taught so many people so much in her young life as I write about her and share her with people, and as she moves about the world in her own beautiful way. She is not an accident or a tragedy or a mistake. She is not “broken.”

I also know it might be hard to wax so poetically about her if she were the poop smearing, hair pulling out, bashing head into walls kind of autistic person. If she never said “mama” or “I love you.” If she had no way of telling me where it hurts."

Dominic falls closer to the poop smearing, hair pulling out, bashing heads into walls category.  Not fully, and not all at once, but he certainly has done all of those.  Hair pulling and Head bashing are still on his list of tracked behaviors at Alpine that we see some of every month.  It took a LONG time for Dominic to say "I love you", and even now, its not spontaneous - its only ever a "la you too".  And he can't tell us where it hurts. He slipped outside the other day and came in  crying.  We thought he just bruised his knee until we stripped him and realized he'd actually cut himself open around his hip bone and was bleeding.   I could never possibly accept this as just his normal and not fight to get him improvements.  He's come LEAPS and bounds in the last year - who knows where he'll be a year from now. That we've even contemplated putting him in a regular daycamp for a week this summer is huge.


The other blog post I read about our community being split was over at Autism Spewage.  My first visit to this blog, actually.  She takes on another blogger who completely denies that anything biomedical can help autistic kids - denies the vaccines connection - makes horrible fun of Jenny McCarthy (who frankly has done more for autism awareness than anyone else in the country).

Its hard to be in such a split community.  Even at Alpine, there're different "factions" if you will of parents.  Those who do biomed until we bleed ourselves dry, and those who think ABA therapy is the only thing that could help...  Its bizarre.   I wish the groups could come together.

Helloooooo, Summer

Even tho we haven't hit Solstice yet, the Hot days (90 today) and Thunder storms (holy hail, batman) are here.

We got the worst hail storm I've ever seen a couple of nights ago... this is what the deck looked like

The flowers and vegetables got obliterated.  So today, I replanted, and i've been working on making hail screens for my veggies.  Because I don't want to have to replant again.

Also today, we toured the YMCA and let Dominic interact with the daycamp counselors for a bit.  It was a success, and we signed him up for the week of July 2, when Alpine is closed.  We'll see how that week goes, but its a HUGE step, and I think it'll be tremendous for him socially.

Since we were at the Y, and Dominic saw their pool... he's been BEGGING to go swimming.   We don't have a membership at any of the pools this year (and honestly, outside doesn't agree with me in more than about 30 minutes bursts), so Rod set up the fishy pool that we had in the laundry room (this is the pool that i used when i was in labor).  The top tube has a hole in it, but the bottom two work just fine.  We're trying to find a patching system for the hole.

He LOVED it:

The Universe has a way of smacking me

Today was my day to update my medical spending tracking spreadsheet, and our medical mileage spreadsheet.  Halfway into the year and we've spent $17K out of pocket for medical expenses and drive over 3000 miles.

And so it weighs on a person... the end of year it could be double that, which is a LOT  of money.

Just when I was thinking about it all and feeling overwhelmed at the grocery list of supplements that we need to add in to Dominic's regime and how much they'll add to our total... i got this link.

we have it so good comparatively.

Logan is an online friend of mine.  I've known about his daughter Cassie's illness for years, and everytime I read about it, I cringe and heave a sigh of relief that while we have tremendous challenges, we have NOTHING like what Logan is dealing with.

I cannot imagine being the parent of a child in hospice, knowing she was going to die and having to make ends meet with Medicaid being stupid about things.