hewo baby.

Anyone who knows me knows that I do not like long gaps between postings and I feel like it has been a long gap since I actually posted something with substance. Not that the last post was worthless...it's very important stuff...but I didn't write it so it was kinda informal. Very "AUTISM" activism related and not Maddy related. I'm all for both on this blog but within reason.

Suddenly not only did we become parents, teachers, and now we're activists too. I shudder to think of myself as an activist. If anything, I've always been kind of an anti-activist. Not that I don't stand up for things but I'm not a "throw it in your face" type that the word "activist" implies.

Justin has been doing most of that anyway...writing and calling representatives for our state legislature to mandate that insurance covers Autism treatment. Because our state does not mandate it and thus, our insurance does not pay for it. I've never had a big beef with insurance companies (always thought they were alright to me) until now. Until the day that we get a huge bill in the mail with a little note next to the amount saying the insurance won't cover it because it "does not cover this psychiatric treatment" which to me is a bunch of crap. This same state insurance will pay for people to quit smoking but it won't pay for my baby to have the treatment she needs to rewire her brain to become a functioning member of society. stupid doesn't cover it.

I digress.

We are in Week Two of ABA (or EIBI...whatever, it's the same thing) and so far so good. This week has probably been more chaotic than last week, which I'm sure last week I would have never believed possible. But it has. And we're making adjustments and going with it as much as we can. That's all we can do.

Maddy is doing well with it. She isn't nearly as resistant as I thought she would be. If anything, she's bored. We're doing our best to integrate what she needs to learn with the basics and trying to be as overly exciting as we can possibly be. She loves to sing "I did it! I did it!" when she does a certain task right and that is probably the cutest thing ever. I will post some video on that soon, I hope.

She is doing well and so far our learning curve has been a steady slope upward and not any real dips down or backward...though I know they are coming. They are bound to happen. And I hate to say it, but I fear it. I try not to, but it would be impossible to NOT fear regression. Heck, I feared regression when Eva was potty training...and that is a tiny ant hill in the mountain of teaching a child how to embrace the world around them with ABA integration.

On Monday we had a meeting with Early Intervention and a local foundation that will be providing someone to come help us out 20 hours a month...with Maddy. Basically helping us with her. Taking her to the park or helping me take all of them to the park or what not. Anyway, Melissa was here with her little boy (who is just under 2) and Maddy saw him playing with her toy phone. She walked over to him, leaned over to get close to his face and said "hewo baby!" She attempted eye contact and an overall greeting to a boy that she sees fairly often. So amazing. A few months ago she would not have even noticed him or she would have ripped that phone out of his hands. But instead, she looked like a little adult...crouching over and saying "hewo baby." and waited for his response.

Those things make me smile. Justin took her to OT and Speech on Monday and her OT therapist was the same one who had done her eval back in July. She had not seen Maddy since July so she was shocked when she saw her on Monday. Literally shocked. She could not even believe the changes in her in the 2 short months since she has seen her. Justin was so excited he rushed off to buy me flowers....only Target didn't have anything other than Mums so he bought me two donuts...lol. What a good man, knowing that I would rather celebrate with a donut than a Mum. Though roses would have trumped donuts, anyday. Another time.

Last week she started saying "Where are you?" She would stop what she was doing and look up and say "mama, are you?" and look around. Now she says it with anyone or anything..."Milk, are you?" "baby, are you?" "dada, are you?"

I could cry. Really. Not that it's overly sad that she is missing something but that it's exciting to know that SHE KNOWS she is missing something. Again, a few months ago she didn't have the awareness to think or know that anything was not there to be missed.

It's not to say that it's not frustrating. It does get frustrating at times. I think she's approaching 2 developmentally...in alot of aspects she is past two but some she is not. And it's exhausting. Though we see her improvements...the tantrums are wild and full force. She hits, she bites, she throws herself on the floor and cries, and she still rocks and moans. I feel like I've had a 1 year old forever. I shudder to think back to when the twins were infants...months old and how I couldn't wait until they were 1 and walking. Oh i could wait. Really. And i just want her to be 28 months...whatever that is. She is certainly gaining the vocabulary...she has surpassed Maelle when it comes to talking but her comprehension has not. And oh what I would give to be able to say "give me your hand" and have her willingly give me her tiny little hand and hold it. I have never been able to hold her hand for longer than 5 seconds without her pulling it away or trying to bite me. I know she doesn't feel her hand being held the same as any other child but I hope someday she might. I really just want to walk hand in hand with her.

You just don't realize how important those little things are until they aren't possible to do.

But one thing at a time. As I type she is sitting next to me on the couch, having woken from her nap, she walked into the living room, turned the tv on, and hopped up on the couch and is sitting 1/3 of her tiny little body on mine so she can be next to me while she watches Word Girl. Happy. Content. One of the characters on Word Girl just tipped over something in a cup, Maddy said "Opsie!" and looked at me to see if I saw what had happened. And then giggled.

That is amazing.

She is amazing.

In the news.

Advocates Want ND Insurance Coverage For Autism


by (AP) BISMARCK, N.D.

Published: Wed, September 22, 2010 - 6:40 am CST

Bismarck, North Dakota - North Dakota's Legislature should require insurers to help pay for treatment of children with autism, advocates say.

Autism is a brain disorder that affects a person's ability to relate to others, and affects children in different ways. Experts say childhood therapy for autism spectrum disorder is important, but extensive behavioral therapy can cost more than $70,000 for a year of treatment.

A North Dakota legislative committee is considering a bill to require the health insurance plan for state workers to cover treatment for autism disorders. The committee's chairman, Rep. Bette Grande, R-Fargo, said the panel will decide in October whether to recommend that the Legislature approve the idea next year.

An analysis by Deloitte Consulting LLP estimates the mandate could increase the state health plan's expenditures by almost $3 million annually.

Nicholas Gates, a Dickinson police officer, asked lawmakers on Tuesday to support the measure. He was accompanied by his 8-year-old son, Noah, who stood shyly by his father's side and said little. Nicholas Gates said his son was diagnosed in late 2005.

"When Noah was first diagnosed, we were very overwhelmed. We didn't know where to turn, especially when we were told that our son needed specific treatment, and we weren't able to get that because our insurance company would not cover it," Gates said. "We were able to get some therapies ... but we were unable to get the social and behavioral therapies that Noah required."

The federal Centers for Disease Control and Prevention estimates that one in 110 children has an autism spectrum disorder. In 2006, the average prevalence for 8-year-old boys was eight per 1,000 children, the agency said. The spectrum occurs more often in boys than girls.

At least 21 states require insurers to provide treatment for autism, according to the National Conference of State Legislatures.

Maddy's Voice note: help us by contacting your local rep or Rep. Grande in Fargo and telling them to approve this measure. Millions of dollars are spent helping drug and alcohol addicts who choose their behavior and nothing is spent for children who are BORN with Autism. Remind them how much money WILL BE spent if these children do not recieve the treatment now and end up being institutionalized for the rest of their lives. These are children. Innocent. Beautiful. CHILDREN.

Where have we gone as a society if we abandon our children? By not covering their treatment, are we not abandoning our children and their families? Give them a chance. To live in happy awareness of the life around them.

humbling.

We had Maddy's EIBI workshop today and while I have loads to write about...I do not have the mental capacity to write anymore today.

I did want to quickly comment on how humbling it is to be in a room full of people devoted to helping your daughter. People who are freely VOLUNTEERING to work one on one with your child. To help her. To love her. To see her thrive. To help us help her. To help Maddy shine.

I don't know if any of you have ever been in that kind of situation. The kind of situation where you find yourself unable to truly do all that is asked of you so you must reach out for help. And to need people volunteering their time as there is no way you can pay all your medical bills, let alone pay people to do therapy for your child. To ask for help and then see it unfold.

It's very humbling. It makes me want to cry.

I have never felt so loved in my life. Ever.

To look around a room of 15 or so people and see them truly devoted to helping Maddy. Helping YOUR child...to see them smile when she smiles. To see them relish in the light that Maddy is. They know she is going to throw tantrums and be difficult. To sacrifice that time they have with their own families to help yours.

Time is a sacred thing. Everyone wants more of it.

Yet time is of the essence for Maddy. And to see these people gearing up for battle. Them vs. Autism. Bolding going into a land of unknown to bring your daughter back.....

it's speechless.

it's breathtaking.

it's love.

And when my daughter, my beautiful Madalynn, is recovered...I can never thank you enough. For giving me my daughter back.

May we take this love and let it grow. Let the world know what love looks like. It will take your breath away.

quick update

The gap in writing is not due to lack of content but more lack of time. Things are only going to get busier from this point on but I'm hoping to get into a routine and I can maneuver better.

My two oldest girls (by seven minutes...woo) started school today. It went pretty well. Maelle has some learning to do...but she is 2 in a 3 year old class so hopefully she will catch on and things will go okay. If not, we'll have to rearrange some child care but for now, it works. We have a bit of time before things truly start so we'll see.

Maddy is doing fairly well. We have started up her Speech and Occupational therapies...right now she goes once a week but by the end of the month she will be going twice. Early Intervention comes weekly. And Monday we have the workshop for EIBI which will start daily after that.

She is starting to put more words together and repeating a bunch. Even repeating actions. She is still rocking and groaning when she can fit it in...but thankfully she is lessening that and knows that I won't let her do it...so many times if she is doing it while watching a tv show, if I sit next to her then she won't rock. Not that I have all the time in the world to watch Word World or Sesame Street but at least she is stopping. Hopefully she will stop all together or at least I can create more distance from her so maybe if I'm in the room then she won't rock or she can see me then she'll stop...until maybe she will stop. I hope.

She went on a hike with Justin today while I was at the church getting her room ready and making sure the girls did okay at school. Justin said she had a really good time. He would ask her if she was okay and she would say "I fine" - very nice.

A couple of days ago she put her hands under the faucet and asked "wash hands?" I think this is the first time she has requested something...let alone with words.

We had our friends over tonight for supper and Maddy enjoyed all of it. It is nice to see that her bubbly outgoing self has not been affected. Eva and Maelle have always been such shy girls that it's great to see one that thrives on new people and new surroundings...so "non autism" - she truly is an amazing girl.

Consider this my short and sweet update. I'll write more soon. Off to bed.