me: "i love you" him: "thermostat."

Quick update.
So, our son hasn't been eating a lot lately. He's got seasonal allergies like I do, and it kills his appetite. Luckily, I can sneak Zyrtec into his "green juice." His favorite protein used to be morning star farms "chik'n grillers" which are vegetarian gluten bombs. We went against his diet and, two days in a row, gave him a griller as part of his dinner.
Now I really see why they tell you to cut out the gluten. It's like erasing a lot of the interventions we already have done. His behavior is unreal. Bouncing off of the walls, hitting himself, pushing his teachers, not being able to sleep, not being able to talk as much (more squeaking and TONS of delayed echolalia).
No more gluten. no more! I guess Paul and I will have to eat it or give it away.
G's teachers pulled me aside and told me how much his behavior had changed this week and I felt bad. But they also confessed that they'd been giving the other kids goldfish in front of him, and he ended up stealing some from the other kids cups. Casein and gluten.
So, yeah, he's regressed a bit this week. He probably feels like crap, what with the allergies, and GI stuff and that always makes the sensory stuff worse, too.
He DOES, however, (50% of the time) tell us that it's "time to say bye-bye poo poo" when he messes his pull-up. We are using the story "once upon a potty" to potty train him, so we follow the story and the routine really helps. We're still hoping he will tell us when he's wet, but we aren't there yet. We sit him on the potty every day and he NEVER goes pee. He'll hold it until he gets a pull-up.

Most pre-school EI programs want kids his age (even autistic ones) to be potty trained. So we wait. and keep trying.

My commute and the hubby's commute are terrible, so we are thinking about moving back to the area we first moved to in Atlanta.
Everyone says, You move a lot.
Yes, we do. We're renters. We can't buy a house. We are always at the mercy of whatever landlord we have. The likelihood of me ever being a homeowner? ha. forget it. any extra money I get at this point is going to go to my son's therapy with the goal of him being an independent adult one day.
If we do not get this therapy, he will not be. He is socially developmentally delayed. He needs some OT and SLP.
He's gonna be a bit miserable til the gluten is out of his system, a few weeks, probably. We are prepared for melt downs and misery. We will take all of the kisses and hugs we can get.

We hope to make the fundraising goal, but if we don't that's okay, too.
http://igg.me/p/198392?a=991292

I've called the autism daycare and they told me, as they have before, that most kids age out before they ever get in. ugh. We are now at the mercy of the school district.
Waiting lists.
Autism is a friggin epidemic. don't get me started.

I just wanna go hug my son now.

60 days. and so on.

Some stuff.
Yesterday we made a lot of potty training progress. It was fleeting...we haven't got consistent yet, but progress is progress and I am not going to complain!
We met with the school board preschool program today and it was actually not as scary as we had thought. Of course, G was a hit with the ladies (he always is), and one of the workers told us she would be delighted to have him in her program.
In 60 days (they say 60 at most), they will have gotten the feedback from the preschool, and compiled all the results of his assessment today. They will decide if they will even OFFER the services we KNOW he needs.
The wording was kind of heart breaking...like they could decide to NOT offer us services.
I have had several friends write me and tell me that their state, or county, has been great and that they are getting all of the early intervention for "free" (also known as THE TAX DOLLARS they, and their fellow residents have already paid.) This may or may not be the case, and as our county has a few "furlough" days this year, well, I know we may not get all that we need which makes the fundraiser all the more important. Next year when I have my FSA, I know I have to put way more aside. I am a nervous wreck.
Our appointment with the super awesome autism center doctor falls within the 60 days. I can't wait to meet him and find out what he thinks they can do for our son. I have been telling the evaluators...a goal that I have is, if I die when he is a young adult, I at least want him to be able to balance a check book and pay rent, and know how to cook.
I'm having a high anxiety day and my phone is upstairs and I am not. Sorry if I have not answered your texts, calls. A lot of crap is going on and I just need to sit here and not think about it for a minute. And, get up and chase my son a lot, because he is three and is a little stuntman.
We may have to cough up the dough after all for the OT, as the school doesn't really incorporate that until WAY into the program, and they ask for it based on how he does in the therapies that they *MAY*  provide *IF* they decide he needs them.
Yikes.
I am in knots.

The good news is, our preschool/daycare LOVES our son. Our son is generally well behaved and sweet and doesn't go out of his way to bother other children. He swats when they bother him. He hasn't figured out how to say "leave me alone" yet. We're working on it. The feedback from the school is more positive than negative. He gives hugs and kisses and high fives, and loves stories and playtime. He impressed the teachers by naming all of the planets the other day. Yes, he knows all of them. Backwards and forwards. My little database. Now, if he could just tell me what's on his mind!
One day...

guest blogger!

I was honored to be a guest blogger on the Mommy Dialogues. Here's the link.

http://themommydialogues.com/2012/mom-monday-just-one-part-of-the-human-experience/

a wee bit overwhelmed

I'm fighting a migraine, I get two a week, so I will make this brief.
If I can get outside and not puke my guts out from the light sensitivity, G and I are going for a ride in his favorite stroller.
Last year, I bought a bumbleride, used, off of craigslist. it is so much fun for him, as it has air inflated tires and a smooth ride...in other words, easy on the senses.

I am going to take Labor day off, (normally I could be working) and use the day to get together with Paul in the morning before Graeme wakes up and have a meeting of the minds. We each know autism advocacy stuff that the other doesn't know. We need to talk over coffee. Exchange ideas. Probably download and print more paperwork. I'm being treated for anxiety (by telling you this, I hope to take some of the stigma out of taking charge of your mental health). Part of the treatment involves facing the fear of the paperwork. Just thinking about it gives me chest pain! eeeeeeep. I have to get strong, and I have to stay focused. My son is the best motivation.

I skipped yoga today. it's two hours away, and I can't handle driving when I feel this ill. (migraines can be caused by anxiety and stress, duh...right?)

Marriage communication was really difficult when I was on nights and he on days. Now, we're both on days, but we live in a rental we picked out before we knew our jobs were going to change. we both spend up to 3 hours a day in the car. it's really taking a toll on me. I wouldn't mind if it was a bus or train, but it's a car ride and it's scary when you are tired. I wish it made sense to move back to the apartment complex, but it doesn't right now. We are too noisy (Graeme plays drums) to be apartment dwellers anymore!)

G (my son) has out grown a lot of his stuff and we have things to mail, things to sell, things to give away. Bittersweet. My boy is growing up!

one large poop for mankind.

I know, gross right? Just what you wanted to read about. Well, I am a nurse and guess what, poop doesn't phase me. That's why when I became a new mom, diapers were probably one of the easiest thing about motherhood.
I am writing about poop today because something remarkable happened.
My most excellent friend and soon-to-be-mom friend Shannon M. bought me a gift card to get a massage. To say it was desperately needed is an understatement. I went this morning and I could FEEL the knots in my muscles. Painful, yes. Worth it? More than I can say. (Shannon - you are AMAZING).
So, my husband tells me as I am on the way home (via the farmer's market to get some fresh fruit, veggies, and such) that our son pooped. Good! Victorious, even, as when he gets ANY casein in his diet it backs him up awfully.
I come home, and we're playing, and he's destroying the living room. All of the sudden he is grabbing his pull-up, says "bye bye poo poo" and very carefully pulls it off and runs into the bathroom. This is THE FIRST TIME he has ever told me in any way that he has gone or has to go #2. He had already gone, but at least he TOLD ME!!!
We go in to the bathroom and take care of it. He is thrilled. He even got excited about washing his hands.
We still have a long way to go, still, but my husband and I work VERY VERY hard to get him to communicate his needs without stressing him out too much. It seems to be working.

I am pretty exhausted. My husband left when I got home to go to the autism support meeting (30 miles from our house). If we had a reliable baby-sitter with special needs experience, I could have gone to the meeting, too.

We had wanted to buy a house over that way but we just can't. Most of why is because when you get bombarded with medical bills you can't pay, they send you to collections. We've both been sent to collections in the last year for stuff our insurance wouldn't cover for him, for me, and, you guessed it...our son.
Insurance would not cover the ER visits when our son had a reaction to the antibiotics for his last ear infections. The rash left scars. The bills have left scars on our credit. They really don't give out mortgages like they used to.

So we are stuck in our rental, really far from our jobs, really far from anyone we really know. Just super thankful I have a job right now. I don't know what we'd do at this point. It's 5pm and I feel like I could pass out. Just so tired.

Thanks for reading.

thank goodness for blogs

I have been searching for information specific to what our son needs.
The fundraiser (OH MY GOODNESS!!! YOU ALL REALLY CAME THROUGH!!!) is going to help us sooooo much get the initial therapy going while we wait for our school district to make an IEP for us. The first meeting is this week. I hope we have all the paper work required (waiting on an affidavit from our landlord to prove we really do pay him rent and live in HIS house).
SO many of my incredible friends, acquaintances, and strangers that I have met through this have given me tips and tidbits of into that are really helping. It's now a process of sorting through all of the info and using what is best for our situation.
Since we are getting the preschool involved, they have been way more helpful. I may have mentioned that they held him back because he is not potty trained. We are making VERY SLOW progress with that. He sits on the potty several times a day but he just can't feel secure enough yet. Eventually he panics and says, "diaper change." What this means: AWESOME! he's telling us what he wants, and NOT AWESOME! we want him to go in the potty. We follow the tips given to us by other parents, professionals. It's just a process. Now he knows how to flush the toilet. He knows after potty, he has to wash his hands. Stuff like that.
Stuff other toddler parents can take for granted, we do victory dances for each and every bit of progress. Last night, he put his toothbrush back in the holder. I was very impressed. He's also starting to ask for what he wants more often. Doesn't say, "I'm hungry" yet, but the other day, my husband left Graeme's gluten free muffins out on the counter. He totally climbed up and grabbed one, ran into the living room, tossed the wrapper aside with the speed and agility of a cheetah, and proceeded to chomp away. "cup-e-cake" says he. Way to spoil dinner!!! But, in a show of independence, he got himself food that he wanted. SOOOO impressed, I did not say NO to him. This is a picky eater. I'm so glad he chose to eat at all.

Back to blogs,  I found one relevant to what we are up to. Just as I thought, more hurdles and paperwork ahead. At least I found a trailblazer:

http://living-up-to-me.blogspot.com/2012/02/katie-beckett-deeming-waiver-checklist.html

 I hope to find some time to sit down and thank all of you for your help, advice, love, donations, emails, etc.
Please:::::: if you chose Graeme's artwork for your perk for donating, I NEED YOUR MAILING ADDRESS or you can have a high res scan sent to your email.

Let me know.

and again, Thank you!!!!

Dan Zanes is awesome.

Graeme likes him. So do I.

I wish we could have been at this show last year, in our old stomping ground of Cleveland.

Sunday November 13, 2011
Dan Zanes & Friends * Presented by D.A.P. Productions * To Benefit the National Autism Association - Northeast Ohio
Beachland Ballroom 1 pm - $24 adults / $20 kids under 12
These days, it’s all about power to the people, isn’t it? And there are very few artists who embody a populist spirit quite like Dan Zanes. After his storied career with the Del Fuegos, Dan began writing and recording years’ worth of albums that have delighted and inspired grown-ups and children. Zanes’ key is simple: don’t dilute the sound by pandering. Talk about hope, love, peace, and unity - and make it catchy but never condescending. Zanes is a one-man music education school, whether giving guitar lessons or discussing the immigration issues that have the United States in a tizzy. Today, Zanes and his pals will get down to the business of inspiration, as part of a kids’ show benefit for the National Autism Foundation.

--------------

no, they really can't wait!

Too old for babies can't wait. so now what?

What happens when children turn three years old?

As each child reaches his or her third birthday, the family's service coordinator would assist them in learning about what resources may be available to them after the child's third birthday. Such options may include, but not be limited to the Georgia Department of Education Division for Exceptional Students which offers special education services for children ages 3-21 in Georgia. Other options may include Head Start, Child Care and Pre-K services as administered by the Bright from the Start: Georgia Department of Early Care and Learning. Families may also be interested in involvement with local and or stateParent Teacher Associations (PTA) . In addition, as children and families prepare to transition from Babies Can't Wait to other services, service coordinators can assist in applying for other services and resources such as PeachCare for Kids, free or low-cost health insurance for Georgia's children, Right from the Start Medicaid, Medicaid coverage for pregnant women and children under the age of 19, Social Security Administration for Social Security benefits information, and various Medicaid programs administered through theGeorgia Department of Public Health and Georgia Healthy Families. Resources and funding to help meet the unmet health care needs of medically fragile children may also be available through the Foundation for Medically Fragile Children.

http://www.health.state.ga.us/programs/bcw/faq.asp#7

In other words...

Yer on yer own, ha ha ha.

We never had a "service coordinator"

wish we could have. All a parent can do now is just try try try.

disappointing

So, the hubby and I were told that the Preschool Coordinator will not meet with us unless we complete A, B, and C things. Like paperwork from our Nurse Practitioner (which I dropped off & paid a form fee for, $10 a page) and hearing and vision screenings.
Since the meeting is next week, I was scrambling to get the appts done. I asked my boss if I could have Friday afternoon off because on Friday morning I called our son's ENT and they got me in for the afternoon appt...someone had canceled. I raced to the school and picked my son up and then raced back to the metro area to make the appointment.
It went great, I had told them in advance that our son has autism, newly diagnosed, and has sensory issues, and would it be okay to bring him in? They said absolutely, and they'd have specialists there. And they did, and the visit went great.
I called Target Vision because while there on Sunday, I picked up a coupon for 50% off of a back to school exam. I wanted to use it. I called the number for the one near our house but no one answered. The voice mail was a man, and he never said who he was or what business it was.
So I didn't leave a message. I called the other number, for a town about 20 miles east. They answered. I told the lady our situation...in detail. Son has autism, needs to have eyes checked for school entry because babies can't wait stops at 3 and the county takes over and we missed the cut off...
Made it pretty clear why we needed the appt so quickly.
She said, you can com in on Saturday.
Here's part of the receipt I got in the mail:
Dear ###### Anyder, (  <-----typo much?)
Thank you for choosing Dr. ############. We look forward to serving your eye care needs.
We would like to remind you of the following appointment.

Appointment for:	G##### S#######
Confirmation #:	########
Date/Time: So, we rushed over to the one far from our house	Sat 08-11-2012 ##:00 PM

We were a few min late, but we called to tell them (long winding roads, slow sunday drivers)
and they said, that was okay, that they were, too. Come on in.

We got there. Graeme got upset by the awful lighting and noise in the vision center. We tried to calm him as they walked over to us and said, "you didn't say you were going to the D-O-C-T-O-R, did you?"
I said, no, he loves Target. However, he has autism and sometimes he gets like this because he's over stimulated, etc..."
They basically gave me a worried look and told me they couldn't see him today.
They told me that they have a special "therapy vision" appointment that the secretary had FAILED to mention to me, even when I told her our situation.
"I can't believe they didn't tell you that when you called?"
We are in awe. Really? we drove ALL the way here, confirming and everything. You never said we couldn't be seen today after what we told you on the phone.

So they basically told us they would not see him, and that they put him in the other Target appt book for Monday. We're cutting it close. I didn't get an appt card,and I don't have an email confirmation yet.
I think we just got blown off.

I may be over reacting ( I probably am) but what happened to customer service? Why, when they saw my son, did they think they could just cancel the appointment? I could not have been more honest.

I think we may cancel on Monday (if we are even on the books) and go to a practice that will screen him LIKE ADVERTISED. Our nurse said we might be able to sneak in a nurse visit before the school meeting. I hope this is true. the hubby may try the target appt just because risking delay in the school board meeting is not a good thing. Delayed meeting = delayed services for our son.

The hubby says we are going to write target and tell them in detail how we were treated. I give them SOOOOO much business. This was the first negative experience I have ever had with them, ever. It isn't their fault. It's the contractor who runs the vision place. It was a waste of our time and gas, and upsetting to my son.

I need new glasses and was going to buy a pair from them. Not so much now.

No Words

I am absolutely humbled and amazed and just can't even hardly speak. A lot of people have donated to our therapy fund. It's just incredible. I could not say thank you enough. wow.
I'm still spending my own credit to get things done for now...like the audiology session today. I know what we're headed for, which is just a lot of scheduling and paperwork and stuff insurance ISN'T going to cover. So far, it appears that they will cover a pre-school hearing test. The audiologists were wonderful. They were prepared to treat a boy with autism, and they worked with him at his pace. Let me recommend them to you if you need that, ever.
It's like having 4 jobs: wife, mommy, nurse, and autism appt coordinator.
I am exhausted.
People are sending me amazing things to look at, and my husband and I are looking at all of the various  links, etc.
LOADS of good stuff.
I am especially excited about PECS. Picture exchange communication system. My son needs to be able to tell me that he is in pain, or tired, or scared, etc. The emotions app we downloaded is helping some. I know we aren't professionals and so I am REALLY looking forward to the meeting with the school and then the super awesome specialist that the NP recommended us to.
You know...he never pointed. Not until this year. RED FLAG. why did I think nothing of it? I hold back tears when I see neurotypical babies pointing for what they want. Saw one today. I just want to tell them...enjoy this. your kid is communicating his needs to you. Enjoy it. It's awesome and a blessing.

I'm still shocked and appalled at the lack of insurance enthusiasm for mental health.
You probably realize there is a mind and body connection.
My son had a rough week at home. He had some gluten and casein recently and it messed up his behavior and his bowels. The specialists we saw in Cleveland when he was 10 months caught the casein, and told us to try no gluten, but I had not been the most strict. Well, now I know how well he does when his guts aren't hurting him and I know I have to stick with it. He loves his gummy vitamins, he gets calcium and D that way, too, and he never complains about the probiotics I put in his "green juice." He's still a picky eater, but hey, aren't a lot of toddlers?
One of the scariest things for me, I think, was when I noticed his regressing last summer. I thought he would lose so many of the things he used to do.
I know they are still in there. I test him once and a while. But I won't lie and tell you I'm handling it. I cry almost every day. Don't get me wrong, I am so so so so so so blessed. I get hugs. Our eye contact drills are working. But I miss him telling me the animal noises, and some of the songs he used to sing.
We are getting some of it back, so I think we are on the right track. My husband and I like to teach him fun things to say, and he does bust them out at random moments. Like Dr Who stuff and Star Wars. so cute.
His teachers confirmed with me that the squeaking that he does at home, he does at school. When he doesn't have an echolalia phrase to use, he just squeaks. Or chirps. I can't wait to get speech therapy involved. I want to do more to help him.
He has said "I can't want it" when frustrated. Rare, but I will take it.
If people yell at him or are inappropriate or mean (and they have been) what they don't realize is, he has delayed echolalia and will, like a record player, say it back later in perfect intonation. That's how we knew Kindercare was mistreating him. That's how we know when his caregivers are having a bad day. "STOP SCREAMING!" is one we heard today from him.
Yikes.
I'm rambling now.
I have to get organized tomorrow, tons to do. TONS.

IEP ASAP

We are meeting with the school board next week, but only if we can get our son a vision and hearing screen ASAP.
If we can't, the meeting has to be rescheduled.
*cross fingers*

plan of care

so, my son's nurse practitioner gave us two referrals:
speech/behavior at the super duper awesome renowned autism center (we have an appt which WILL NOT BE COVERED in Oct) and by the way, thanks to the fundraiser...WE CAN DO IT, and AFFORD THE FOLLOW UPS!!! and...
and
for occupational therapy with sensory-motor stuff which he really really needs (the place is open on Saturdays. He really really needs the sensory stuff.

and insurance wants to be ridiculous and not work with these institutions.

and...between Graeme & I, we ran out of my FSA for this year. I had pre-cancer removed from my foot, Graeme had been ill, had an abscessed broken tooth, I had to have a pretty emergent root canal (there was infection...)

so...
while we await a meeting with the school district and want to begin therapy...
do I find another pediatric OT professional that they do cover? and is it as comprehensive as the one our NP wants us to go to? Speech Therapy is needed.

Many Americans were worried that with Obamacare, we don't get to choose who we want to see.
The insurance call center lady told me that the lack of coverage and the lengths I'd have to go to for them to maybe even consider it will take over a month. maybe two. And, that is how it's been for years and isn't going to change. AND...Autism is covered sparsely, but it is covered. Falls under mental health.

Don't they say, Babies Can't Wait?

Howard County, Maryland is where I used to live. Their early intervention program is from birth to 5 years old.
Georgia's Babies Can't Wait is from birth to 3.
Then they throw it at the school districts. Pity for you if your district doesn't give a crap or is under funded.
Thanks to the IDEA act, my son SHOULD be able to get some of the services he needs from the schools. If they'd just communicate with us.
My boss told me we should try to get into a school board meeting. I think this is my next step.

People have asked...can we pray for you?
Yes. You can dance the electric slide for us, do a cartwheel, light a penny candle, donate to a cancer, autism, alzheimer's charity in Graeme's name...whatever! Good vibes are good vibes, no matter where they come from.

Again,
thank you. I will try to write more later.

Putting the FUN in fundraising

So, early on, I called my dad, crying, about how in the world were we ever going to pay for all the stuff insurance isn't going to cover, and the co-pays, etc.
Dad suggested we do what the musicians do (and since I have been playing music all of my life, well, ok, what IS that?)...
I started an Indiegogo page so that anyone interested in philanthropy and helping families deal with autism can stop buy and throw a dollar or two our way. Why not?
I feel weird about asking for money from strangers, I mean, it's not like I'm running for office. I'm just a mom who wants to do right by her son.

So, here is the link.

Autism Therapy: the beginning:

Thank you for reading this, and if you contribute...super duper thanks.

All funds go to an account that I can use for co-pays and all the fun stuff insurance won't cover.

More adventures in Echolalia

My son loves the word: consequences.
He also had us laughing with tears when my husband said "ponzi scheme" and he echoed it back, pitch perfect.
I want to write more but I just have had no time to myself lately. But we have a lot more to write about.