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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

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!

index

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!!!!

IMG_0798

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:)

What did you get for Christmas?

I would love to live vicariously through all of my Christmas friends!  Please let me know what you received for Christmas! Seriously. Was it Quilty? Crafty? a Tie? disappointing or uplifting. The truth can be told!

bundle of gifts!

The House

The unbelievable journey towards home ownership in North Carolina has left me absolutely gob-smacked.

So many ridiculous problems.  So many ridiculous people.  Some pretty stupid none to smart people,  too.

The first hurdle – finding a house.  Looked at 69 houses.  I can tell you the layout of a house without even go inside the front door at this point.  I know where the land is too low and water pools. I know the exact mileage from any point in the county to the University and the kids school. I know where the best schools are. I know about heating, and cooling, and water tanks, and joists, joints, and the importance of ceiling fans. The ‘great room’ concept completely escapes me.  Why would I want to have to keep my kitchen clean at all times because it becomes practically the focal point of the house? Not me – doors that close it off, please.

And the space issue – yes – admittedly, we require (need/want/spoiled brats) a lot of space.  Two kids who fight – a boy who destroys and a girl who has a million tiny princess things that g*d forbid, the boy should even look at. Equals, two bedrooms.

Then one for us – I guess I can share with my husband!  And wouldn’t it be lovely it even had a closet(!!) and a private bath!

An office for him and his gazillion tech gadgets.

A space for me and all of my hobbies (you wouldn’t compromise, would you?)

A fenced yard to keep the above mentioned children from escaping.

An attached garage so we can unload groceries just a little easier…

A nice lookin’ house – one that you are happy to drive up to.

A well-kept house  – one that doesn’t scream – I am so flipping old and ugly – look away, just look away.

A house that doesn’t stink like dog, cat, or any other animal that although I am not against, I certainly don’t want to smell.

And I found it. And then some.  A beautiful house.  A house that is WORTH all of the absolute bull@#$# we have been through to get it.  At one point, I asked if I could see it again to remind myself that yes, it is a great place.  I can deal with the ridiculous problems, people, and dummies. (a spade is a spade).

Before I continue (and if you have gotten this far – congrats – because I think this more about ‘getting it out’ than informational at this time!) I shall show you a picture of the house!

Here is the front of the house from the right hand side.  I wish I had a picture from the other side because it is so much prettier! But this ain’t so bad!

Here is a (short list) of the issues we have faced:

1- a Realtor who basically talks out of both sides of her mouth and has given the seller (for sale by owner) more advice than she has given me.  Granted, that advice has come in the form of 8am SUNDAY morning calls so I am not that upset. But still, she’s a nutcase.

2 – We were told to pay off all of credit cards and then not use them again.  OK, now, we are the type of people that pay off our balances each month and hate to pay interest.  However, we do USE credit cards because otherwise, we wouldn’t be able to buy food at the end of the month because the man only gets paid once a month. So, those CC’s do come in handy. Why did we have to do this? Because our income to debt ratio was a skwinch over the acceptable percentage. Fine. Whatever. Weird! but, whatever.

2 – a rental house from ((*&* that wouldn’t answer us 1 way or the other until November 30th about whether we would have to continue paying rent if we bought this house. So even though we had made an offer to purchase on October 3rd – we didn’t even know if we should rent a truck or start packing until nearly 2 months later. With many phone calls, tears, leaky roofs, lead testing, lawyers, and negotiations.

3- a broker who was recommended by No. 1 above (need I say more) that over promises and UNDER delivers.  Man, just tell me the truth. Don’t tell me everything is a ‘go’ when clearly, it is not. This is the dummy in question. I receive an email on the 30th of November (what a joyous day! both a letter releasing us from the lease in hand AND an approved mortgage!!) saying that we had been approved by the lender.

4- Apparently, our flood insurance is not the quoted $300 per year – it is $3,000 per year. Can’t afford it. Can’t buy the house. Cry. Find a new insurance agent. Back to $300. Hurah!

5- We were not actually approved by the lender.  We had only passed stage 1 of what is, apparently, a FIVE stage process. I won’t go into details about that here because honestly, even I am tired of typing this up – but we were told an un-truth. WHY were we not approved through all of the stages? Because they never ran a new credit report showing that we had paid off all of the cc balances referred to in #2 above. So – we have nothing on the credit cards, about $15 bucks in the bank, and they are still counting all of those balances against us! No logic. How to argue where there is no logic?

6 – On the 13th of December – we received a call from the dummy saying that the bank needs a gazillion more dollars in downpayment before they would approve the loan. Um. What? This is when I have HAD IT! I went to the broker’s office and basically said that either we close on the 15th (WHICH HAS BEEN IN WRITING ON THE OFFER TO PURCHASE SINCE OCTOBER 3RD) through them or we would be closing through someone else.  They reduced our fees significantly.  The idiot (he has been downgraded from dummy) was REMOVED from our file and I would be dealing directly with the owner.

7 – Need to get another line of credit elsewhere so that we could get a gazillion more dollars.

8 – More money from Canada. Canada sure has a lot of money. Oh wait, there is none left.

9 -The original offer to purchase has now expired because we have missed closing. Need to sign a new one.  Oh wait, I signed the first one with a verbal power of attorney from the man (mortgage in his name but I am doing ALL of the legwork on ALL of these parts) in front of the crazy realtor who never ever not even once said that the power of attorney would have to be drawn up by an actual attorney. She has been a realtor for 48 years (retire, lady) and didn’t know that??? So because of this – the loan is withdrawn from the bank and then put back together again and re-submitted.

10- We are now 8 days passed closing. We have been given 3 different, new, closing dates which never materialized. Like I said, if you don’t know for sure, please don’t say it is for sure! Because, for each new closing date I have had to re-schedule:

a – movers

b- carpet layers

c- time warner and all of the other utilities.

d- coordinate with the seller

e – change the appointment with the closing attorney. (more on that later).

f – cry!

g – explain to the kids that their favorite toys are still packed.

(oh and let’s not forget that during all of this we had halloween, the kids’ birthday party, channukah, trying to launch SeamedUP, and now – CHRISTMAS!)

11- We all into the full-swing of everything being closed for the holidays.  So even if we get this mythical closing package from the lender (which is step 3 of 5 in case you are wondering) we cannot get to the next step – attorney because his office is closed from the 23rd through the 3rd.

12 – find a new attorney.

13 – Now we need to work around the holiday schedule of the records department because even if we ‘close’ with the attorney – it needs to be recorded before the funds are released and the seller’s can’t buy their house until they get those funds. Did I mention that the sellers had no heat for 3 days because they cancelled service because we were supposed to CLOSE?!

14 – At this very moment – I am waiting for Tuesday, the 28th of December.  This has been PROMISED to be the day of reckoning. I have re-booked, once again, all of the domino’s that fell, the moving parts that stopped, and the break-down I really need to have.

And now – I will leave you with this.  A few more pictures of why I have been able to survive, thus far….

The back of the house

Yup – it has an outdoor hottub

A sweet little bridge just behind our back fence (the bridge is ours to maintain and use) that runs over the sweetest, clearest little creek

And leads you to the walking trails beyond.

The sunroom. That gets a lot of sun. and is screaming for some cute.

And finally  – the family room.  Where I hope to spend the rest of our years watching our family grow.

I apologize for the lack of indoor shots but I haven’t a clue where they are right now!

Happy Holidays everyone.

Allison.

 

We made it!

We have arrived in North Carolina, safe and sound, with exception of the years taken off of my life due to the constant complaints, tears, screams, and demands coming from the backseat. (in case you are wondering, Jarrod was in the front).

And now we are in a Sea of Packing Paper…. Ah. Alas – we are here! Can’t wait to podcast again:)

Bye Athens,

it was real.