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