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.

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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.

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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.

it has been a week, i’ll tell ya

Last Saturday, hubby went out of town for a conference. (one week ago today) Sarah took ill. Cough. Fever. Poor dear.

Off to the clinic ($87.00 copay).

Tamisil (like the morning after pill but for the flu – I swear I have no better way to put it! and it curbs that monster but good) $67.00.

Sunday. Mom takes ill.

Monday. Sarah home from school. Max late for school. Mom calls in sick.

Tuesday. Sarah back at school. Max in school. But they are both late. Mom calls in sick on her deathbed. Dad comes homes with Stomach bug.

Wednesday. Sarah at school. Max gets picked up from school with 103 fever. Mom still on deathbed. Dad still… well, you know, it’s the stomach bug.

Max goes to clinic. Mom goes to clinic. $87.00 copay for two today, please. Tamisil for one. (the morning after not the morning after the morning after….)

Thursday. Max is home. Sarah throws up at school. Mom still on deathbed (but a deathbed that drives, mind you). Sarah at home.

Friday. We give up – no one is even trying to go to school this day.

Saturday. Today. Mom is coughing so much that her can picture her head splattering on the walls. Well, maybe not. But ouch.

Today: wash 4 loads of ‘for your puke only’ pillows, sheets, towels, clothes, snuggly friends, and perhaps toss a small pillow with a waffle print away that we all know was a goner.

Today: vinegar and water on the sofa where ‘maybe’ Maxie threw up on Wednesday and ‘maybe’ his mother put down a towel and said, ‘there there dear, go back to sleep’ (I’m pleading insanity from the 102 fever of my own that day)

Today: Max wakes up with pink eye! $87.0o co-pay $20.00 drops

Give me a break already!

Today: the first day of 12 days off for the kids. Thank goodness because I swear it’s like I never see them anymore. Dripping. With. Sarcasm. (but you knew that)

Happy Holidays from our family to yours!

And if even 1 person says in a comment “so why didn’t you go to the clinic for yourself again right away to the tamisil…” Famous last words!

Well, I wasn’t deported!

May I just say that the INS officers are almighty powerful folks who scare the living be-jesus out of me.  I am never ‘natural’ around them — I turn into a nervous wreck who says things like ‘I my kids love a lot’ ?? or ‘I working at home for California’ There aren’t even sentences that make sense in there!

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Luckily they do understand nervous and let me rephrase!

We were interviewed for 2 hours — Can you imagine me on my best behavior for 2 hours? Yeah, me neither, but somehow, I ‘think’ we pulled it off.

Apparently, while the officer had the physical file, the electronic version had not been transferred from Texas to Durham yet and so not action could be taken! Government at its best – wait 2 years for the interview and they aren’t ready…

So – the dude said ‘if you don’t hear from here me in a couple of weeks then its good news’ – to which I replied ‘I don’t plan on answering the phone…’ See? I told you, nervous!!

Our lawyer emailed us yesterday to say that she received notice that our file was being electronically transferred, so we are hopeful that he is moving forward on our case!

Last night began Channukah, and unlike last year, there will not be 8 nights of gifts, talk about a) expensive and b)they just wanted to know what was coming next… Made us feel like not giving them anything at all!

As we were at a Channukah party last night – we are starting our family celebration tonight and it shall last all of one night! (we’ll light the memorah for the next week but all gifts will be exchanged this evening)

And I have been waiting for the magical year when my daughters age matched the age on the box of the kid section sewing machine and it’s here it’s here!!!!

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She LOVES to make things and has been saying things like ‘I guess when I’m like 18 you will let me sew on your machine?’ Yup, that sounds about right, actually, but she now has her OWN machine to play on!! I hope she likes it.

Oh yeah, I used to have a blog and a podcast, too!

Hello everyone!

Well times flies…

The family and I just returned from a trip to Montreal, where we spent all of June.

Long drive – and you know Max, keeping us on our toes! During our visit – Jarrod gave an impressive talk – I turned FORTY! – and my parents reminded me that the best part of being grandparents is not having to give 24/7 care… More on that in the next podcast.

I am itching to speak with everyone:) Which means I will be making a little me and the mic time!

Back soon,
Allison

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?!

Mine!

Mine – all mine.  Well, I do have to share it with my family.  But still – WE ARE THRILLED! We are moved in but not yet settled.  Will be soon. We have time. because I am NEVER moving again:)