ch-ch-ch-ch-changes

Poor G.
His life has been a whirlwind of changes.
Mine has too, but not like what he's been through.
I feel bad about it, but I know we are doing the right thing, especially since we've already met with all of his new teachers, seen his new classrooms, and filled out mountains of paperwork for each of the following: medical, special ed program, and private preschool.
I had hoped we would save money on preschool since he's going to a special program for 1/2 days, but we are paying about the same. This is because the amount of time G will spend in private preschool is about the same as before. If P and I split the cost instead of me paying it altogether, we can both get back on our feet, as we have some time to get caught up.
It IS a bit humbling to move in to your in-laws house, I won't lie. However, this kind and generous act of theirs is just what we need. This year, I kept saying, would be THE year I grew up and got my act together. I was in therapy (which, though the co-pays were KILLING me) I desperately needed. So much crazy crap has happened to me, and even though I work full time (therapy lunch breaks!) when I come home, there is NO down time, really (which explains the sparseness of this blog!) I should be showering (stinky pits!) but I want to write some stuff down. This is as much as for you, the reader, as it is for me.

I want to HUG the SLP (speech language pathologist) that G had been seeing for a few weeks in GA. He has SOOOO much more functional language....rather, he's got it in his mind, but is now able to apply it in meaningful ways. He is asking for things now, by saying "I want, I want."
I have been trying to get the "please" in there, and "thank you" but manners and formality are something that we have to work extra hard on. He used to say 'thank you' sometimes before he started regressing last year. I have read that autistic children can come off as rude (and we have also experienced this is public). I have no problem telling puzzled strangers that G has autism when they say hello, and they don't get any eye contact or response back. They seem to go, OH, OK, and are not as offended.

People tell me all of the time that he seems pretty normal. In fact, I take that as a compliment. He loves to play and has a fantastic imagination. Water bottles are rocket ships, paper towel cardboard is a telescope, etc. Really, the biggest issues (and the ones that do define autism) are the lack of interacting with others, eye contact, communication, etc. It's not just autism, though. He does have accompanied symptoms such as shyness, anxiety, and even a bit of depression (evident when he just can't understand why he can't do things that other kids his age can do...like pedal a tricycle or ask for EXACTLY what they want.

He does still move furniture and climb rather than ask me for what he wants.  This means he can NEVER, and I mean NEVER be left unattended. He fell yesterday when I walked into the other room briefly to grab my phone. he found the stepladder and tried to get his favorite cereal out of the pantry. He was okay, but I think my blood pressure went through the roof.

My health has been horrible. I saw an NP at a neighborhood clinic at my mother-in-law's urging. Luckily I went...My oxygen sats were 5% lower than my normal at room air, my blood pressure was 50 points higher than my average systolic, and the diastolic was also approaching dangerously high. My lung sounds were horrific, I had a fever, and my heart was racing. I had small bruises all on my arms. The NP told me there was not much more she could do for me without sending me to a hospital. We talked, and she sent me home on some antibiotics, said FINISH YOUR STEROIDS! and told me to rest, rest, rest, or I will have to be hospitalized. I don't want to be a patient, I am a NURSE! I like to give the care, not receive it!!!!  Luckily, my mother-in-law was here and has been helping me out a lot. I was terrified I had given G an illness so I was glad I had made him a visit for his cough (post-nasal drip). The way I see it is, if I can still walk, I am okay.

We met his new pediatrician. He was great! He looked and listened and assured me that G is doing great, continue with zyrtec as needed, and he was good to start school. *phew* So mommy here is just a mess, but G is fine :)
Again....sign of relief!

So...things have been tight. We've been without P for over a week now. He stayed in Georgia to finish packing and cleaning and work full time. He is going to be about 20 pounds lighter when I see him.  G's teacher Ms Heather and her daughter have been helping him when they can. Thank goodness. It was so hard to live in the outskirts of ATL and not have anyone. G's preschool was pretty much the closest thing we had to family. I miss everyone!

I have already seen several of my siblings-in-law and their kids in the last month. That's been nice.

Potty training has been a bit on and off. G is again, in the class with the two and three-year-olds in his private preschool. This will be the case until he is potty trained and able to function socially with the three and four-year-olds. We had a trial day at the private school. His teachers are sweet...one actually lived in metro ATL for a few years, and came back for the same reason we did...it is TOO hard to be THAT far from family. The kids in his class, though younger, speak circles around G. I could not believe how different neurotypical toddlers are...I mean, I kind of knew, but I got to spend school time with them, and they are so different than G. Visually, G blends in with them. The class is multicultural which I like...a gorgeous variety of children which is well representative of the way the United States is today. The children are kind and well-mannered. They tried to include Graeme in all of the activities. I didn't tell them he was different. I told them he is very shy! (well, he is!)

Ohio is doing a lot legislatively to help families with autism. We will have a whole lot of paperwork come January, so we can apply for some of the programs G is eligible for. It will help as I am financially drained from this year and since I carry G on my insurance and cover all of his medical costs, I have to raise the white flag and continue to ask that people will donate to his fund.

The autism fundraiser is on until Christmas day. I ask that family and friends who read this and want to give G toys and stuff for Christmas to give to his fund instead. We don't care if we meet the goal, we just want to have the funds for all the various costs (including the autism center in Cincy eval coming up). So, again, in lieu of gifts, please donate to his fund. It has helped immensely and we could not have got this far without the support of our friends, family, and total strangers.
http://www.indiegogo.com/singingeverything?c=home

I was a caller on "The Sound of Ideas" on WCPN regarding Autism legislation and costs. Please click here and if you want to hear what I said, I come in around the last 11 minutes of the show. The whole program (about an hour) is well worth the listen.
http://www.ideastream.org/soi/entry/49899

I have to say, although I feel pretty ill (lungs mostly), I feel good. I feel like we have done the right thing by asking for help and not letting pride get in the way. I feel like G is going to have the best life we can give him because we gave up the prestige of our careers in GA (prestige doesn't always pay the best, anyway!) and we are not thinking selfishly about where we want to live, but where we NEED to be. Ohio it is. I moved to this state in 2003 for a scholarship to nursing school. It is hard not to let it get into your blood and it's even harder to get it out. Many of my east coast relatives and friends don't understand it. Yeah, I miss the subways of New York, and the food, and the infrastructure and the proximity to MY FAMILY, but G has so much more access to what he needs here, without being denied access simply because we don't have the funds or the class. Seriously.

By the way, an autism private school year tuition, not counting summer, and adjunct therapies can start at 25K a year. Just a thought. Thank goodness for public school teachers and therapists and all that they have done, and all that they continue to do.

Next blog: the terror of living next to water, and how my son doesn't understand how dangerous it is. When I tell you I am SERIOUS about volunteering and fundraising for a service dog starting in January, I am mean it. My experience yesterday with G and the lake almost gave me a heart attack. It took all my guts to hold in the tears and not lose it. Without you, reader, to talk to, I don't know what I would do...

Stay tuned.

Service Animals

finally - a minute - sort of...

Well, the time has come...G and I are leaving Atlanta this week, for good. P will follow not long after. G is going to go nuts when he sees "grandpa's house" (the condo) again.
What is new? Well, first of all, because of the fundraiser, P and I didn't go broke taking G to get all the stuff he needed to get registered for school, the eval at the *fancy* autism center, and the eval at the super awesome Occupational Therapy place. There's a bit left, and we are saving it for the first appointment at the new autism center we are going to in Ohio. We will see them early next year. Worth the wait, believe me.
Having been more active at home with his treatment plan, and having placed G in a special half day program (free to us...ok not free...paid for by us and the mighty taxpayers of our county school district), we have seen him open up in so many ways. Let me tell you about them:

1. eye contact:
he is doing something in the last few months that he rarely used to do...he gets excited over something and turns to look at us to see if we notice too! If you have a "neurotypical" child, this is nothing new or exciting to you, but for me...if he would say, "Mommy, look! look at this," I would probably pee my pants.

2. standing up for himself:
we went to a friend's neurotypical son's 3rd birthday party. The difference between our sons is pretty vast, but I will say one thing...their son is a delight. He is so sweet and kind. They tell me, unlike G, he does not know his numbers, letters, etc, and isn't interested yet. However, he is EXTREMELY socially smart and always tries to talk to G and help him out, share toys, play, and include him in whatever fun he is having. He doesn't get offended that G can't always figure out what he's saying, or feel the need to join in play with him, but it does mean a lot to us that he tries. So at the party, we met this friend of the boy who was very cute, but a bit of an alpha-male if you will, and kept taking ANY toy or balloon that G had. Finally, in front of EVERYONE, this kid swatted at G to get G's balloon, and G smacked him back, immediately. Mortified, I apologized (because G doesn't realize he needed to say "sorry I hit you. please don't take what I am playing with") and explained that G had never hit anyone until he started daycare (to which everyone laughed). P whispered in my ear that he was secretly proud of G for standing up for himself, and really, so am I. We had read a report from the school district when they observed him in his private preschool. Other children had been knocking over things that he was building with blocks. G didn't even flinch. He stood there stone-faced, until the child was done destroying his structures, and when the kid walked away, G picked up the pieces and began to rebuild. If only us adults could be so undaunted by people trying to destroy all we work hard for!
Like I said, we are glad to see that now, maybe G will hopefully verbalize when someone messes with him or his stuff. One day!
*side note...a kid in his private class had been moved out and his teacher said that this kid was a hitter, and since he left, G is not imitating his behavior anymore. Nice!

Trying to blog with a toddler...not easy!

3. more expressive language!!!!
you heard it right...G has been in speech therapy twice a week, as well as receiving ABA. He has a few sentences that are not echolalia that he uses appropriately that let us know what he wants...sometimes...
We are getting things out of him like:
---I want it - adventure
---all gone, Massachusetts
---bye bye Doctor and Nurse
---I want Occupational Therapy
---I want Ms Amy (the OT)
---want preschool

Ok, some is echolalia, but a lot is functional. He even seems like he understands more.

Trick or treating was on Halloween here. We chose to dress G up (as Woody from Toy Story, a costume I bought for next year, but his Cookie Monster one was drying from the messy Saturday we had!) He LOVED having constant "ding-dong" doorbell noises, because each one meant a group of kids (and sometimes DOGS!) would be there, and they would say "TRICK-OR-TREAT!" G didn't realize he was supposed to give them the candy...he stood there in awe and would repeat "happy halloween" every so often after I said it.
The next day he was upset (so so so upset) that as we were leaving to take him to school, there were no trick or treaters at our door! ("WANNA TRICKORTREATERS!!!!)
He has been melting down a lot more, but because of the holiday, we have been VERY lax about trying to get both schools to comply with our strict diet. Thank goodness for probiotics, miralax, and gas drops. His poor GI tract had more candy this week than he has ever been given (to my knowledge). We didn't introduce candy into his life; daycare did. Ugh. But he is a kid, and he seems to enjoy being handed candy by a cute costumed indian baby girl with large brown eyes and the chubbiest cheeks you ever saw. At the Brookhaven town Saturday Trick or Treat. I bribed him with a lollipop. checked for milk and gluten...none...but dyes? yes. But, he needed a hair cut from a professional (first one in two years). Did he meltdown and freak out? yes. Was the hairdresser awesome? You bet. Did it take FOREVER? yes. I had to hold him down. Do I feel like a jerk? Yeah, but I can't neglect his basic needs....grooming, feeding, hygiene, hunger, warmth...you get it...
I chose to trick or treat with G in Brookhaven, starting at salon red - kids, because my awesome and wonderful hairstylist David told me about this guy who spent 4 years building a COPY of R2D2 that is lifesize and works!!!

AAAAAMAZING. So G had a busy day on 10/27. Flu vaccine (yes autism moms...I vaccinate my kid. I spread out his vaccines as long as I could, and didn't give Hep A until he started daycare (REQUIRED for entry). I am a nurse, I had H1N1 and I never wanna put anyone in my family through a full version of the flu when I can boost their immune system a little bit! Plus, it is required at my place of work.
(...So, right now, as I type, G is eating his favorite lunch meat snack while spinning around. I'm impressed. I'd be puking...don't judge...he's happy and he is eating...)
We took him to the occupational therapist for his eval. Which they told me would cost about 400 bux (or a bit less) out of pocket, but they are submitting to my insurance which, I am told, is probably going to reject it, but whatever...thanks to YOU ALL, we can afford to pay it out right. Awaiting the bill. Gotta pick up the eval and send it to the new center we will be going to in Ohio.

G had a great time at OT. We learned a lot about him, actually. He has DEFINITE sensory issues, but we knew that. However, now we know what they are, and Ms Amy, the OT, gave us some exercises we can do at home with G, and he loves them. It was really eye opening.

I bet you are wondering, how the hell did I get G into the car on a Saturday morning without his Dad being in town? (P was gone for 5 days and I managed G all alone...soooooooo tired, but so grateful to have a partner to help when he's home.)
I have been browsing through Temple Grandin's "thinking in pictures" which helps me understand how to present information to G. Since I don't have PECS at home (and not much time to make any cards) I have been drawing pictures on the dry erase boards we have to illustrate what we will do in one day, when we have a lot to accomplish. I draw them in sequence, and repeat the sequence verbally over and over while pointing to each picture. By the time the morning came, he was able to repeat back to me what we would be doing. So the car rides went pretty smooth, and aside from the haircut, all went well. We added a 4th activity...a trip to the humane society to see cats and dogs available for adoption. G loves our cat, and we want to get him a dog eventually because he responds very positively to them. They delight him and calm him.

Not far from where we will be living is a great charity that trains service dogs for autism. We would LOVE to get one for him, he would definitely benefit, but it's 13,000$ and you have to raise the $ through them (which we would love to do) but I am worried about trying to raise more funds in this economy. With the move I am taking a HUGE pay cut, but I will also be saving a LOT of $ on gas costs and child care may be less expensive. P will maybe split the cost with me for this up there. Maybe we can finally get on our feet?

So we may try to get a young, healthy rescue this Christmas, and train him or her to be G's constant companion. Autistic children have a tendency to wander and G is no different. I want to teach him to dog walk along side me, and to groom and feed and care for a dog. He likes to be in control of things whenever he can, and part of his anxiety is that he doesn't have much control over anything in his life. I get sad, too, when I read about his "anxiety and depression" in his evals. I understand, though. We are doing everything we can to stabilize his life right now.
He will miss his teachers here (they LOVE him) and I know they will miss him. However, we need to be closer to family, closer to jobs, closer to friends, closer to resources we need, etc). I have a feeling that when we are less stressed, he will be, too.

I am waiting to hear back about some more blood tests I had to have. Autoimmune illnesses run in the family and I tested positive for anti-nuclear-antibodies. LOTS of them. I've been pretty ill on and off for the past years, with swollen face, hands, feet, and other issues. Now it looks like my body is attacking itself. Not cool. I hope to see a Rheum soon with my blood tests in hand. Don't know what it is, may be  SLE, and if that is the case, well, they have treatments for that and I can manage it.  Grrrrr. All I know is that I want to live as long as possible and be here for my son, who may never be able to live on his own (worst case scenario.)

I've said it before, but I will work very hard to give him the BEST life I can. If he knows anything, he for sure knows he is loved. And he loves outer space and knows all the planets. But that is another entry...

love,
a, p, & g

So many exciting things...

...that I will write about later. Ahhh, to be bored! Will I ever be again?

Enjoy this pic.

More soon, I promise.

taking a moment

I just wanted to write down that G is doing great in his new program. He's only gone for about 3 days now. He loves his teachers and when he comes home he says their names.
We are making a lot of progress (in regular toddler terms, now...) like more eye contact and occasional functional speech (rather than catchphrases and delayed echolalia!)
Today was really neat. He was eating his cereal this morning. He stopped, looked me directly in the eyes, and signed "cereal"
I need to get all of the baby signing time videos; he really responds to them. He was signing things I don't know that he is learning in school so I better get on it, so I can really "communicate" with my boy rather than just asking questions or explaining things, and hoping he understands me!
He has been saying NO a lot, and I know that a lot of two year olds did that, but now my 3.5 year old can!!!
I really enjoy being his mommy. When I take him to school in the morning, it feels so strange and yet so natural at the same time. Sometimes I wish I could have another child so he would have a sibling and know the joy that I know of having brothers and sisters. However, I know that we can barely afford to give him all of the things he needs and so I feel it would be very irresponsible of us. I mean, we have to hold a fundraiser for all of the expenses we will have. I have already taken a nose dive into more debt just to get things caught up. Paying medical bills with credit. ARrrrghhhhhh! However, do not think I am complaining...rather, I know how fortunate we are. I'm just exhausted and it feels good to talk about these things. Believe me, I know we are not alone.
I'm going to lay down now and snuggle my little one so he will go to sleep. He has sleep problems still, so if I don't hold him close, he won't fall asleep. At least the night terrors are gone!!! thank goodness.

again, thank you all for the love and support!

catching up

So sorry to have not written much. I really don't have much time to myself. When I am home with G, it is often just me and him, and he has really been a handful lately.
Lots of things have happened, where to begin?
Socially: He has learned how to use the word "NO!" He's has really not used it in the right context until fairly recently. To say no in the past, he would just push his hand up, sort of like "talk to the hand" if you can picture that.
He is getting better at asking for what he wants, but still climbs things and moves furniture to get what he wants without saying a word.
Potty training: he can, about 70% of the time, tell us he has to "say good bye to poo poo" and we go to the potty and we have a routine down where we take his dirty pull up or cloth diaper and flush the mess. Parents of non-neuro typical children know just how awesome this really is.
I am so proud.
To say that I am exhausted is an understatement. I just got some labs back that show I have some auto-immune stuff going on, not sure what (hoping it is not what it looks like...) but I'm sick right now (cold?) and I feel like a truck has hit me.
Paul and I took turns going to the TACA (Talk About Curing Autism) conference this weekend. He went on Friday night and I went all day Saturday. It was so refreshing to be around parents and doctors and volunteers who knew just what I meant when I described what life with G is like.
One of my personal heroes, Martha Herbert PhD, MD, made time for me and listened to a bit about our struggles with G's gut problems. She suggested for him, and for me, since my own body is starting to destroy it's own systems, that we switch to the GAPS diet as soon as we can.
I read about it. It's actually not that bad of an idea. It will be hard for G and I to give up all the grains we love so dearly, and so this is something I will work into slowly in to his GF/CF diet. We are going to give up soy for a bit while his gut heals.
If you want to read up on the GAPS diet, I highly recommend it. It is VERY similar to paleo, but it helps you avoid foods that irritate the GI tract so that if you stay on it for about 18 mos to 2 years, you can help reverse gut damage and begin to feel better. NO PROCESSED FOODS! sounds easy, but it will be a struggle. I don't think P will want to do it.
At school, I have not been able to enforce the special diet that G is on, and some of it is because they still serve Goldfish (used to be a fave of G's) and he freaks out until he gets one (including stealing one from someone else...even when I provide substitute!) Someone needs to invent GF/CF goldfish. They will be millionaires. The school called me...someone's mom surprised them with cupcakes one morning as it was a kid's birthday that day. No warning. No time for me to bake alternative cupcakes that he could eat. They knew he would melt down if he didn't get one. Being on the spot, I said yes. I want G's gut to be calm, but I also wanted him to be socially included so I caved. Ever since, we've just been lax and I feel terrible about it. We lost so much progress. Super stimming, repetitive phrases, sensory issues back in full force...even the vacuum was too much, as well as parts of sesame street.
I learned at the conference that this crap stays in your system for about 10 months. I HAVE to be a better parent and be in more control of his dietary health.
That being said, we are moving to OHIO, but in the Cincinnati area. We found a great school program for him and I FOUND A JOB near the school AND condo. Feeling blessed. Huge pay cut for me, but I don't have to pay as much for gas and child care anymore. I MAY just get caught up on bills and debt.
I feel like a jerk moving him RIGHT after he starts his autism program here, but I have to be honest: we are renters here. We have horrible commutes that lead to very little family time. Moving closer to our ATL jobs is dumb because rent will go up and we can't afford the schools (public schools all have various programs for autism, but we didn't find too many that we felt were right for our boy that we could afford.)
So, this winter, we will be PERMANENTLY in OHIO. P's parents are graciously letting us get on our feet so we can BUY the condo from them in about 2 years. P and I want to own it out right as soon as we can (who knows...15 year mortgage maybe?) so that if we pass prematurely (which given our genes, is very likely) G will have a place to live, always.
I think the best thing we can do for him is get him in a stable, constant environment and work towards owning the place so he won't have to worry about that. I am hoping that by the time he is an adult, he will be able to hold down a job and drive and go to college if he wants to. He's so smart, we just need to give him the tools.
I am going to write more later, but I am waiting at a Starbucks to pick G up and take him to his other, regular preschool, then head to workies. The autism program called me this morning and told me he is doing great (he cried A LOT when I dropped him off...it broke my heart.) I can't wait to see him.

I'm racing against the clock at work for a deadline that is next week so I have to bust my butt today. Better stop at Walgreens or CVS for some Cold Eeze and tissues.

More soon, I promise.

By the way...that fundraiser? THANK YOU THANK YOU THANK YOU!!!

We can now afford several appointments that we have (the super duper autism center one is this week!!!) and all the stupid fees and appointments and paper filing, etc)

I could not do this without you.

thank you.

expression

My house is a mess. I am exhausted! this was another day of 4 hours in the car. Ugh. Work was good though. Got a lot done.
I am sitting down on the couch watching Graeme play with a toy I bought him before he was born. A lullaby Glo-worm. He LOVES it. He has rediscovered it. He's holding it like a baby and kissing it. I'm not interfering.
P and I think we are pretty lucky in so many ways; it's funny how many people say "i am sorry" when you tell them about G's diagnosis. It's been hard, well...it IS hard. But we're not feeling sorry, or sorry for ourselves, because at lease now we know what we need to do, and I am no longer to live in denial. Not that you need to hear it, but I am so over the moon for this kid. I feel like he was meant for me. He is my sky, and stars, and everything.
P expressed to me that, when G was 18 months or so, and completely obsessed with the alphabet, that G might be showing more signs of autism. I just wanted to believe that he was just super smart, and that was just him being shy and nerdy. However, when he would get upset, instead of saying, No, or Wah! he would say, crying, ABCDEFG! I remember the puzzled looks P and I used to give each other.
Right now, as I write, he is repeating phrases he's heard all day today, from us and at school. He practices talking. From talking to other parents, we understand that it sounds pretty awesome. Our kid talks! What a lot of people don't realize is, he can talk, but he had a hard time communicating. Sort of like how I know a lot of french words, but I don't know how to use them and have a hard time expressing them when pressed to. We got the school district's evaluation, which they have combined with the university's evaluation. It was kind of upsetting, because it just reinforces what we already knew. However, this is also a good thing, because now we have a school district verifying that our son has the developmental issues (speech, behavior, communication, etc) and will need intervention by the school. I feel like, at home, we are making progress with the sensory stuff. haircuts are still a bit of a crisis, but he has been letting us wash his hair once a week. If you think that is gross, don't worry, we comb and brush it everyday, twice a day, and use a gentle soap and water rinse every other day. He is starting to love baths again. Can't clip his toenails unless he sound asleep. And he's a light sleeper. He fell yesterday and hit his chin. Big bruise. I told him later that he has a bruise and he laughed hysterically. He has inappropriate reactions to pain often. We're working on signing with him. He can sign "hurt" but doesn't always apply it.
Baby signing time is great, though. Read that Rachel from baby signing time is 2nd cousins or something like that with the Butler brothers from Arcade Fire. Pretty cool!
P and I have some pretty exciting news (no, we're not having any more kids!!) but we are keeping quiet until we know all of the details. I'll give you a hint: closer to family. Good programs for G. Stable place to live. Closer to more friends. Not DC :(

Private message me if you wanna know the dirt.

It's Friday night. G is up partying with his daddy and I gotta tell them it's bedtime!
Rudy the cat has a vet appt in the AM. He pooped on Graeme's favorite alphabet book last night. We think he has a G I problem or he is having issues with loneliness because Boots is gone and he can still smell him on our furniture and because we don't play with him as much because of all the therapy stuff we do with G at home now.
It should be said that G is rough with Rudy and Rudy never swats back. The only time Rudy swatted was back when Boots died and G pulled his tail.
Our cats have always been very dog
Like and protective of G. I feel lucky in that way.
So I hope Rudy is ok. He puts up with a lot. We love him and I don't know if I can take another furry baby passing away!

hands full!

Today I am trying to keep a balance of parenting, laundry, cards & scans, and trying to relax. Up against huge deadline at work which may require me to work a few weekends this month. yuk. Gota enjoy family time today. I am set up where we can all play together.
Our son is feeling under the weather; has some kind of cold or allergies. Extra clingy, which isn't too bad because we love hugs and snuggles.
with just what P and I are doing at home (best we can) he's making great progress.

He's playing with my phone. Pretty cute.

So, I ran into the PhD lady who diagnosed him on Friday. Randomly. She's running a longitudinal study on early intervention in autism. We hope her study stays funded so he can follow up with her next year at the age of four. It was nice to see her.

It was weird because I was looking at a condo in the school district we would like to be in. Afterward, i got some fro-yo and there she was. Just wow. I took it as a sign that maybe that is where we should be.

However, I was in a hurry to leave and go get G from preschool, so I didn't check my email. The condo was in a desirable area. someone wrote to the owner first & they got it. Crap.

P and I are tired of being in the car 3 hours a day, each. If we stay in our metro area, we HAVE to move closer to the autism resources and our jobs. I have so much on my mind. Yikes. Tired of moving, tired of making dumb decisions. Want all decisions from now on to benefit my son. Thank goodness for parents who have tread this road before we have, and have given us so much to work from.

Can't wait for the TACA conference. 

Just learned that Tony from the punk band Adolescents is a huge advocate for Autism and taught special ed, and is the parent of a child on the spectrum. Wow. I haven't seen "the other f-word" yet...(is he in that?) but hope P and I  can watch it tonight after G goes to bed. If he falls asleep at a decent time! (sleep disturbances are common in Autism.)

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.

progress

My son has his good days and his not-the-best days.
However, the husband and I are trying to do what we can at home, ABA apps, floor time, eye contact exercises, as well as continuing the stuff we have always done. His teachers tell me they are seeing improvements all the time. Especially eye contact! This feels so good to know and to see.

Candy wrapper

Just wanted to note that Our son got a hold of a starlight mint and opened it all on his own. And ate the mint.
Progress! Fine motor skills...woot woot!
We went to our first TACA meeting today. Boy are we glad we went. It gave us so much perspective and we met some other parents that have been and are in our shoes. They know how we feel. We aren't alone!!!

Don't break my heart

My son keeps going around saying, "don't break my heart!"

I don't know where he got it from, but I am going to to assume he was listening to Elton John and Kiki Dee while at daycare, or something equally silly.

I worked for a little bit today. My husband told me that when I left, our son said:
"I love you mommy!"
Which was unprompted and completely awesome.

He also took a piece of his United States puzzle and showed it to the husband.
"Utah!" he said.
Yes, it was Utah.
This kid can name several states but can't tell me when he needs to pee.

But we are working on it!

He is doing pretty well on his new Gluten Free, Casein Free diet. Less bloating in his belly, less whimpering in his sleep, and more words and meaningful phrases. Nice! The hubby loves to cook, and he's getting really good at making GF/CF foods for the whole family.
I think I need to write Udi's a letter and thank them for their blueberry GF muffins. My son LOVES them.

So this week I will call the one autism school and see if we can tour it and if it would be a good fit for my son.  We like his school now, but we have had problems with them not changing his diaper/pull up because he couldn't tell them that he had to go potty when all of the other kids in his class could. I picked him up one Friday. His diaper was saturated with urine all up to his back. It was not the first time that had happened. Monday came, and I talked with his main teacher. She was apologetic and honestly thought someone had changed him. Now, she writes down the amount of wet/dry pull ups he has, and another teacher has been putting him on the potty. Last week, he peed on the potty for the very first time. I think I had tears. So proud.

Being a parent is so humbling, and I know that we tend to, as a society, just take for granted that we CAN have kids, and when we do, assume that they will be "normal" and one day able to fend for themselves. I feel great comfort in the fact that I know a great variety of people who appreciate just how amazing and challenging it is to be a parent, esp to one with "special needs" as it were, and those that can have kids or adopted have realized just how lucky we are. I'm glad to know people who have decided they don't want kids, or can't have them, but appreciate this journey that others have taken on. I had never assumed it would be easy, and I never dreamed it could be this amazing.

Every kiss and hug I get from my son reminds me how awesome this is.

Adventures in Echolalia

I have 8% of my outdated Mac battery left. I'll make this a quick one...
First, I want to apologize for the poor grammar, spelling, and hurried/inconsistent flow of this blog. Even though I am married and have an extra parent in the picture, I seriously get very little time to myself. We both work full time jobs and every minute I am home, I spend with my son. he's a toddler first (before he is a toddler with autism) and I find myself chasing him up and down the stairs while trying to cook & clean. Forget about me time. Forget about time to sit down and go over finances. I'm going to have to start getting up at 5 am on Saturdays now to get my bill paying paper work type stuff in order.

Our commutes are awful. We both have 1.5 hour commutes home. The morning rush we can sometimes do in an hour. Every minute in the evening with our son is precious time before we do dinner, bath, bedtime.

A friend used to say to us that it was cool that we didn't have a strict routine. Only it wasn't ow I wanted to be, it was just that we couldn't have one. A night shift mom and day shift dad have to just try and survive, which is what we did.

Most importantly, even though the husband and i almost split up for good last year (a long story which you can hear over coffee sometime if you wish), we had decided that, no matter what, our son comes first and we can deal with our crap (issues, etc) later. You only get one chance to be a great parent. We are not having any more children.

Our son is so funny. He is bright and sweet and kind. We didn't realize until the psychologist pointed it out, but Graeme mainly speaks in Echolalia. He can bust out some pretty hilarious stuff sometimes. An example of this is when we went to Florida for his 3rd birthday. He was looking out the window, standing on a bench? Well, all of the sudden he started to dance and sing "all the single ladies, all the single ladies!"

I don't like Beyonce. She can sing, and all, but not in my house. He'd heard it somewhere, randomly. All of the sudden he, in perfect pitch, busts out with the words.

Our friend Chelsea and her son Sebastian started laughing so hard, I think we were all crying. Out of nowhere.
His little toddler database(brain) is not so little, we have discovered. He can quote entire children's books and songs. He's known his ABC's since 20 months. If someone yells at him at school (which they did at Kindercare for the month he was there) we will know, because he can quote them in perfect pitch.

I have more funny stories but not much time to write them down. Later, maybe.

I'm hoping to meet with the Autism daycare next week to find out what our options are.

The First 100 days

So, this whole diagnosis thing is really overwhelming.  Luckily, I've been spending a lot of time with the hubby and my son. I feel bad in so many ways that we didn't get him evaluated sooner. We missed out on a program called "babies can't wait". Three is the cut off. My son is three. Now what? Trying to get answers. I know we can get therapists to come to his preschool, but not sure how it all works yet. I wonder if three year olds get an IEP (individualized education program)? So much to think about.

I don't think anything could have prepared me for this, though.
I had noticed as early has 18 months that my son was not socializing as he should have. We had a play date and he barely noticed my friend's son. Fast forward to his second birthday, and the little boy my other friends brought over kept saying HI to my son and trying to play with him, but my son would barely acknowledge him.

The hubby and I thought it was our faults. We are pretty introverted, believe it or not. I'm a tested myers-briggs ISTJ. Socializing takes a lot of energy out of me and though I am blessed with my wonderful friends from all of the places I have lived, I like that with the internet I can let them know I love them even though I don't get to see them much. This is mostly geographical in nature, but also, when we had our son back in Ohio, we did not have many visitors, and all of the socializing we did...we had to bring our son along. Not always cool with our friends, but we had no family and had a hell of a time trying to find a good babysitter.

Our son was not in daycare til we moved to Atlanta. In Cleveland, and sometimes in Atlanta, I  worked full time 40 hours + a week, night shift (then eventually 36 when my boss FINALLY let me go to three 12 hour shifts on night shift. I'm an RN, it's exhausting work. I felt horrible because when I got home, I was so tired I could barely talk. I had to stay up for over 36 hours sometimes. It went like this...
1. stay up all day with baby
2. go to work for 12 hours and the hubby would watch the baby at night
3. come home and stay up all day (nap when baby napped)
4. go back to work that night for 12 hours...
you get the idea.
My schedule was erratic, too. I never had a routine, which meant the baby didn't, either.

I breast fed him, I wore him in a carrier, I had him sleep next to me or in the bassinet next to me, etc.

A punk rock granola mommy, if you will. He had Ramones lullabies, and went to acoustic punk band rehearsals with me.

But the thing is, I felt sure that it was the tired mom who didn't talk much to her baby that may have started this whole regression thing, and that it got worse when I lost my new job in Atlanta when he was 22 months old due to ILLNESS I got from having put him in daycare. And I couldn't find anything quickly enough to keep the bills paid. I took a travel job and was only able to see my husband and son every few weeks. My heart was so broken. Luckily, where I was...Baltimore...was an easy flight to ATL and I had friends and family up there and a great place to stay.

I noticed some regression when my husband took my son out of the expensive but amazing daycare we had him in. Thought this was related to stress from all of the changes. Maybe, but again, the psychologist informed me that what happened to my son was going to happen, stability or not.

I suppose I feel extremely lucky that I established the warm bond we have early on. This has allowed my son to really trust me and know that a hug and kiss is always readily available from mommy.

Autism is a spectrum disorder, and my son is most definitely a DSM criteria matching one, but mostly because he has trouble with communication and socialization. He is so very smart. We encourage any activity he shows interest in that is productive and safe and fun. Right now, he LOVES his map of the USA puzzle. He puts it together without any help. He knows the names of several states. I'm so impressed. I love that he loves it.
He loves counting, the alphabet, drawing, dancing and singing, and building trains and castles and cars out of shape blocks. Oh, and he LOVES his collection of balls. He has soccer, basketballs, etc. He loves music and drumming very much. The other day I played bass and sang and he drummed and sang "monkey gone to heaven" by the pixies. (he just loves them!) the hubby videoed it. Free music therapy.



He's getting better at telling us if he wants something to drink or eat, but he still won't tell us if his diaper is wet or messy. Toilet training is going to take longer than we thought it was. And let me tell ya...it's been slow. He's not afraid of the toilet anymore, though!
However, we got a packet from Autism Speaks (they are so nice, thank goodness they exist) and I think we are on track for the most part. The packet is called the first 100 days and it sorta walks you through what you need to do.

Our son's dx psychologist states that he needs 25 hours of intensive therapy a week. We're still waiting for the detailed report. The evaluation will be typed and really detailed. Like, longer than a term paper. They take 4-6 weeks to get, usually, because it will outline recommendations for therapy and list his strengths and areas of needed improvement. Til then, we just gotta do what we can to keep stability and normalcy for our sweet and loving son. We are reading as much as we can about how we can start the therapies at home, like ABA, and floor time. Any suggestions from parents with autistic toddlers are welcome.

Navigating the Hurdles

So, apparently, our insurer isn't too autism friendly and I wonder if there are any at all that are? Probably not. You wouldn't believe the deductible and the fees for out-of-network.
What we plan on doing is two things: going through the specialist center AND also getting the public school district evaluation once the come back from summer break. That way, when he does Pre-K next year, we can have state funded pre-k OR i can keep my son in the program he is in now, and just have adjunct therapy. We told his school and they were really helpful and kind. They told us he can stay. They love him, and he's never been a problem. He does have a bit of anxiety about certain things, and is just NOT ready for potty training. We also contacted his teacher from last year at the prestigious school we had him at. She was the one that pulled me aside, shortly before our son was two, and told me she suspected Autism. I listened to her, but I thought...well, maybe, but let me give him more time to grow and see if anything changes.
Well, he is still wonderful and sweet and lovey and super smart, but he just isn't socially there. He just can't converse. I get really excited when he says things to the hubby like, "Where's Mommy? Mommy's upstairs." (which I was). I know conversation isn't far away. I'm looking forward to speech therapy. He already quotes books, movies, and TV perfectly and has a great singing voice. We just want to know how he feels and if he is in pain, or tired, or wet, etc.
He does say "I love you"
and in the right context.
We also get kisses and hugs.
Do I feel like I won the toddler lottery? Yes, yes I do. There is nothing better in the world than to hug my son and be hugged back.

---
Tonight, I made our son a GF/CF dinner (gluten free/casein free). He had Spinach Artichoke Hummus, home made chicken nuggets (he ignored them...wah!), Van's waffle, and a Banana, as well as a few bites of a veggie burger. To wash it down, he had his favorite: Odwalla Green Superfood smoothie. (His favorite...well that, and Naked Green Machine). I love the smoothies, 'cause I can sneak his vitamin into it.

The hubby came home later from work and was hungry so we ordered a 9 inch Gluten Free, Daiya cheese pizza with bacon, black olives, and green peppers with a tomato sauce. OMG! So good. I already feel a difference when I stray from the GF/CF diet. we're doing a little bit of paleo recipe stuff, too. Uncle Maddio's Pizza rules. We love the great variety of food that the Atlanta metro area offers.

By the way, we knew our son was casein intolerant, and that's why he drinks soy milk.  I knew that he always does better Gluten Free, too. We are unlocking parts of his mind with the mind body connection thingy. Less tummy aches means better night sleeping!

Ok, more later...Gotta get some zzzzzzz. Gotta work and make phone calls tomorrow.`

Father's Day

We enjoyed father's day this year.
mellow day...letting everything sink in, and just loving every minute we spend with our adorable son.

Photos as therapy

http://www.npr.org/blogs/pictureshow/2012/06/13/154932456/frustrated-by-autism-a-father-turns-to-photos?ft=1&f=97635953&sc=tw&utm_source=twitterfeed&utm_medium=twitter

pretty cool story.

Yoga for Autistic Kids

My son already loves yoga. Gonna look into it.
http://www.mindbodygreen.com/0-3817/7-Benefits-of-Yoga-for-Kids-with-Autism.html

Entering the spectrum

Yesterday, the hubby and I went to a free evaluation that our pediatrician had given us access to. We were told it was a screening led by GSU researchers to help diagnose and treat developmental disabilities early, so that the children will have a chance to live the most normal life possible...(but what IS normal, anyway?)
Well, our son has socially awkward parents, and I had an idea things weren't right. This child of mine is soooooo smart! He could spell WORDS with his alphabet puzzle pieces before he was three. Before he was two, he would draw alphabet letters all over the house. He can memorize stories, songs, and even songs in other languages. He counts and organizes, etc.
He is pretty affectionate, asking for hugs and kisses. But his eye contact is rare, and he doesn't always respond when you call his name. He can't tell us his name. He can't tell us if he is hungry, or in pain, or if he is cold. In fact, he is clumsy and gets injured a lot. Scrapes, bruises, normal little boy rough and tumble stuff. It doesn't faze him at all. He doesn't really interact with the other kids at school. However, his teachers love him, and they tell me he is very sweet and is the smartest toddler in all of the toddler classes. We haven't had too many issues with him, other than the fact that he doesn't tell his teachers when his diaper or pull-up is wet, because he doesn't know how (even though we have tried teaching him this repeatedly!!!)
When I was pregnant with him, I took prenatals (with folate) every day, went to every ob visit, slept well, ate healthy, and only drank 1/2 of one beer at a cookout at the end of my pregnancy to help relax my pelvic floor (it didn't work!). I did not avoid caffeine, mostly because I was a rotating shift nurse most of that time and I needed it desperately! However, the researchers (Ph.D and all) told me none of that would have changed this outcome. I have very strong genetics and the hubby may, too. My mom family's got some stuff, as well as two brothers. One brother is a very high functioning "aspie." BTW, he is 22 and is awesome. Hold down jobs and is a very good human.
Well, my son is autistic.
There.
I said it.
The hubby and I are still in shock. I have only told my best friend. He told his mom. I'm telling this blog (NOT facebook, or anything). I will be writing more later. I will say this: I am not complaining. I'm just a bit in shock. This is life-changing and we need to get our stuff together and put aside our differences(more on that later), and get started with his therapies n stuff.
Gonna chronicle our journey and tell our story. I know we are not alone.
I am so blessed with this wonderful gentle being. I'm going to make sure he has all the love and help that he needs on this journey.