Help Found!

Yesterday, I posted about having (hopefully) found help for our son, Max, and in turn our entire family.

I am so pleased with the result!

Erica came over at 5:30pm and by 6:45 we had a little plan in place that we could immediately act upon. She educated us on how Max processes things because of autism.

Autism.

autism-symptoms

We have known since Max was wee that he was ‘special needs’. He has had Physical therapy, Occupational therapy, and Speech therapy since he was one. (he’s 61/2 now).  We knew about the obvious difficulties because we could SEE them. He couldn’t crawl, sit, turnover, walk, jump, skip, ride a bike, swing, open a marker, put the cap back on, keep food in his mouth, blow bubbles, point to his knee, or tell us very much.

Through the help of all the therapists, he can do all of those things and more.

But he can’t dress himself, although progress has been made. He can’t brush his teeth himself, or bounce a ball, or hoola hoop. That’s OK though because we help him and he’s learning skills all the time.

I have been trying for years to get an occupational therapist to come to our home and help him learn those skills. They don’t teach teeth brushing in Kindergarten, you know? And while I certainly taught his twin sister, a typically developing over-achiever with a glint in her eye how to do it – those methods don’t work with him because of his problem with sensory processing.  I am his momma, I know him the best, but I never studied childhood education or anything like that. My own tool box was depleted.

chart

When I said yesterday that we couldn’t get any services for him – I should have been more specific, we couldn’t find any services for him at home. We were told many times of these magical funds that provide things like free childcare where a trained professional would work one on one with him, and it just sounded so great! BUT – that’s when the bureaucracy crept in. There are no services in this town that will take on his case because he doesn’t have medicaid. Pure and Simple. He doesn’t qualify for help based on his disability alone because he is not ‘frail’. Therefore, you turn to medicaid which is for the child but looks at the resources of the parents and apparently we are too rich. And anything that is private has waiting lists. We have been on one list for 8 months – 8 months and we haven’t even been given an appointment time – we were just told that we would get one eventually. Another list, for a private Dr. (who does take insurance, but the co-pays are way high but that’s OK because it’s for Max) has had us on that one for 6 months.

We have seen clinical psychologists, and psychiatrists, and behaviorists, and even had children’s social services show up at my door (long and ridiculous story) and NONE of this was right for Max.

And in the meantime, his behavior at home is awful. He has terrific mood swings – in a minute he can be laughing, angry, and then weepy – without any outside indicator of what set this off. He is abstinent, mean, rude, he spits, jumps up and down, kicks, throws things, rips stuff, and uses every last ounce of patience and then some. We have no idea how to discipline him because who knows if he is really capable of processing a punishment. He has consistently tested as a 3-4 year old level (2-3 years delayed) and we just don’t know. One person says ‘he understands, lock him in his room for 20 minutes every time he has a tantrum’ another says ‘speak softly to him’ and so on.

IamMoreThanAutism1

My point (rambling that is is…) is that there were so many obstacles for him to overcome that we could SEE that autism never really entered the picture. The ‘indicator’ we were told to look for was whether or not he would make eye contact and oh boy, does he ever! He loves meeting new people and is extremely cute and friendly and inviting. But he can’t ‘play’ with them and he has never really had a friend. He gets very anxious over small changes, he sorts and re-sorts huge piles of things into categories that make sense to him.  He doesn’t accept verbal explanations. For example – he will ask for paint (which he wants to paint himself with – no problem, outside, have fun) and if we don’t have any he does not say ‘oh, ok’ he just keeps asking.

Once I started researching autism more and more – I realized that Max’s behavior aligned with so many of the indicators that there had to be more to his story.

And so a new search began. Instead of looking for an occupational therapist – I started researching resources for Autistic kids in the area. And THAT is how I came to find OASIS – a small company owned by two women who wanted to serve autistic kids in whatever setting they need. It is private. No insurance. No medicaid. But guess what – the amount they charge per hour is LESS than our out of pocket co-pay through insurance would be. Amazing system they have here. (Canada has its perks, but it also has limits on broadband..and yes I realize I am comparing healthcare to internet but hey, give me a break over here).

I have to say that having a child with autism always sounded so foreign to me. I remember very specifically, while pregnant, thinking, oh those poor parents – thank goodness I won’t have to deal with that whenever I heard about it on the radio or podcasts or anywhere.  So yes, there is a mind-set adjustment that has taken place.

There is also a huge sense of relief.

I feel like I understand him a little better now.

There is no cure for autism.

But there are specific things we can do communicate better with Max. There are specific things that Max can do to communicate better with us.

And Erica is helping us re-design our tool box of parenting skills and our whole family will be the better for it.

whoosh of air escaping from my body.

autismPS – all of your comments are dearly appreciated.

PPS – this is not going to turn into a blog all about autism – it has always been about my life, with a focus on quilting, and it seems my life keeps changing but through it all I keep quilting!

PPPS – I really hope that someone out there reads this one day and says ‘oh my god, me too’. We feel alone, but we’re not. 1 in 88 kids has autism.

enough with the P’s

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Today!

Today is the day that we finally have someone coming to our home to help Max. It’s been a long road of Services that are NOT available through insurance – only through medicaid – which he is not eligible for because his parents make too much money (ha!! that’s a good one). A long road of waiting lists – two of which we are still on. But today is a big step in the (please please please) right direction. We have thought so before only to be told – nope, can’t help.

PS – Max has mild CP (hypotonia and ataxia in case you know what that means), poor gross motor planning skills, he is developmentally delayed, has no impulse control, and most recently, we are discovering that he is autistic.

2013-03-16 12.37.09And of course, it goes without saying that while he has some serious mood swings – he is as sweet as watermelon in August.

Snow! In North Carolina?

I could be complaining that it is snowing in NC for the 2nd time this year when I was promised told that it snows every 10 years here.

Or – I could be complaining that this means the kids are home from school today and my regularly scheduled programming has been preempted.

BUT – instead I will CELEBRATE that we now live in a house where I can say ‘why don’t you 2 play outside?’ and I don’t have to go with them! Thankful for fences and big back yards today.

And holy moly – WHEN did she get SO big?!

Landscape Quilts and a crazy lady

Before we get onto the crazy lady portion of the post – I thought I should start with some pretty pictures because without pictures;  the blog police come out. (just kidding – aka quilt police).

Anyway.

This quilt was so delicious in person.  Literally stopped me in my tracks! I couldn’t believe that this was actually made up of BLOCKS and not just a whole cloth! Unbelievable seam matching!

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Sorry the last one is blurry…

Onto the CRAZY LADY Portion of the post. In order of appearance.

1 – Moving:

  • Packers coming on Monday
  • TWO 3 year olds constantly underfoot. Wanting to play arts and crafts with everything I am trying pack.
  • Why am I packing – see above – because the packers cannot lay their uckyiness (no offense) on my pristine fabric – because I have a feeling we are talking long term storage in boxes and I need to label it all PERFECTLY so that I can find it one day – because no one loves my treasures the way I do. You understand.
  • Racing to put ‘like items together’ so that the packers don’t put weird things together in a box. It makes unpacking a night mare.  I am even trying to round up all of my tension rods (weird obsession, I know, but I use them for everything!).
  • Making yet another ‘run’ to the donation center today. How much stuff we don’t need is truly remarkable. And how much of it was brought from California in the first place is even more remarkable.
  • Gathering up all of the kids clothes that they have grown out of. Third round. We knew we were moving in February. Round One. Summer came. Round Two. They keep growing! Round Three. And giving to a neighbour that can make good use of them. EXCEPT of course for the precious articles that I can’t bare to part with. Wait until the next move, I guess.
  • Fruit Flies!!! I hate them. Enough said.
  • Still have to go through the kitchen and get rid of weird food items like shmushed granola bars.
  • Etc. Etc. Etc.

2 – Car:

  • Hey, why not get a new car? I mean, it’s not like I’m busy or anything, right?
  • Jarrod says I am definitely manic because I went out for milk and came home with a new car. No, seriously.
  • Truly the easiest and smoothest transaction I have ever partaken in – so odd, eh? And a really good sale.

3 – Selling the house:

  • Can you believe that 3 days before we are to move out of our own private Athens we receive a BID ON THE HOUSE!!!! A truly pitiful offer, really. Still in the counter your counter offer phase but pretty sure the deal will go through because we are basically giving away the cow, the milk, the milk carton, the fridge to keep it cold in, the glass – you get the picture. I am just happy that we are not in a worse off position like so many others are. At least we will pay off our mortgage. But the renovations? Free. Getting back what we paid for the house? No.
  • Realtor just called. Sold!

4 – Goodbye parties:

  • Thankful that people give a hoot about us and want to ‘say goodbye’ but why in the last few days before we move when we have a zillion things to do? Like right now, I have to load the (new!) car with the donation run and then pick something up to bring to the potluck (why we have to bring something I don’t know but whatever) and then go to said potluck. Bye bye rest of today.

5 – Sanity:

  • I have assembled little ‘kits’ of my own for 2 projects in addition to the ongoing Grandmother’s Flower Garden quilt. Really, I have no idea when I will be back in ‘production’ ha! so I am making sure that there will still be accessible quilty goodness to ensure an outlet for all of this pent up stress (rage!?).

So – this crazy lady is signing off for now.

I’ll be back soon.

After we drive from here to there with the kids in the backseat. Yippy.

OK – ridiculously proud parents on pre-school graduation day

They were singing ‘I’m bring home a baby bumble bee… won’t my mommy be so proud of me…’

Yes baby girl, We are SO Proud of you, with or without, the Bumble Bee.

(Sarah is wearing pink shorts in the photo). And notice the matching tie-dyes? The kids LOVED having special shirts for a special day.

I love you baby girl – even though right now you are wrestling with your twin brother who does not want to wrestle and therefore you are just beating him up. Maybe I should be mommying instead of blogging.

See ya soon.

Happy (belated) Mother’s Day

First Mother’s Day where the kids kinda understood what it was about.  Although Sarah kept asking where her present was… The kids bought me some chocolate (which I shared) and Jarrod bought me (the requested) new coffee maker.

On Monday, we did our groceries and I guess they just did not need these balloons anymore because ‘the waiter man’ (according to Sarah) clipped them right the babies carts! Yup, I lug around 2 carts when shopping… They are getting heavy!

Sarah is actually in the bag, in case you were wondering.  Then Jarrod said he couldn’t take her photo because she was nack-ed under there.  Sunglasses and the balloon to the rescue!

OY.

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Max took the bus