Gluten free cone and dairy free sorbet

Yay!!! 

He's four. And he finally likes "ice cream"

It's just that we're living

I know I haven't posted much.
Honestly, I am so busy and overwhelmed I can hardly keep the house clean.

However, a lot has happened which I will tell you about:

1. multidisciplinary meeting with our Autism Center went very well.

2. The school decided that he didn't need summer programming?!

3. Still no professional ABA though P and I use Apps and PECS and art to help him.

4. We found a game called bug builder that is awesome and has made it easier for us to wipe food and dirt off of his face.  how about one for teeth brushing and nail clipping!>

5. OT went really well yesterday. They are going to help us with G's food aversions and grooming and sensory processing!!! every two weeks.

6. His yearly check up for the longitudinal study went very well as well.  He is still delayed...but he has gained 22 months worth of speech and language in only ONE YEAR.

More soon, I promise. So much to talk about.

Meanwhile, keep on educating yourself about Autism Spectrum. Please.

Thank you.

IEP, MRI, OMG!

Well, a lot has been happening and that's why we haven't posted much. We are swamped. Both parents working full time and G going to two schools, etc.
We adopted a very awesome dog called Galaxy. galaxy has really been a blessing. She's very sweet, smart, and forces us to go for walks which reduces stress and anxiety as well as allows for time to forget about our troubles.
Family dog walks are fun. As far as chaos goes, an almost 4 year old is way more messy and destructive than a dog. She is G's snuggle buddy and constant companion. She loves him, and he loves her. She even helps him socialize. He practices social skills on her. "Hi Galaxy!"

A lot has happened. In early February, we saw the NP that from the autism center, and she determined that we should rule out Neurofibromatosis as he has a lot of cafe au lait spots (I do, too, but I am pretty sure I ruled out) and they are looking for any abnormalities that could be causing his autism. He also had some genetics blood drawn. We are looking forward to learning more about G and the ways we can help him.
PECS are a must in school, or a rigid routine.
He had a bout with pneumonia in January but he's doing better.
I am exhausted.
So, more later...

I love being your mom

G,
You are awesome. I love you.
You make every morning the best morning ever because I wake up and I'm your mommy.

Glasses Mommy

So, Sometime last week, I decided to wear contacts at work. Thinking about how nice it would feel to not have to wear glasses for a day since I had been wearing my glasses pretty much regularly since we moved to Ohio again. So I showed up at G's daycare to pick him up after work. I was wearing contacts. He looked at me and said want glasses mommy and then he started to cry. He would not come to me. He would not look me in the eye but that's not unusual! However he would not let me hold him or touch him and he would not acknowledge me. He kept saying over and over "want glasses mommy!" he said this over and over and over until finally his awesome afternoon preschool teacher decided to grab her reading glasses.
She came up to me and handed them to me and said: hey these are just reading glasses but give it a try if you put them on he might want to come to you.
So I put on her reading glasses and I whispered to her "I'll leave them at the front desk when I leave." She winked at me and said to go ahead. I put them on. It worked. He came to me and let me take him home.
I learned that day that routine and consistency are not just great for schedules for him, but appearance as well. Wow.
So no more contact wearing for me for a while!

only a minute

Ok, I never post. It's because I really just don't have time lately. I am working full time, as usual, but in a M-F capacity, and my weekends are spent cleaning, doing laundry, and, you guessed it, hanging with G.
He is very stressed out with all of the new changes: two new schools, new place to live,  sometimes daddy has to go away on business trips, sometimes the autism program he goes to is closed, etc.
I just wanted to mention that though we have had several behavioral setbacks...like potty training, and communicating hunger and thirst, he is making progress in other ways, like acknowledging other people in the room, and asking for a preferred parent "want mommy." "want daddy"
He still fights bedtime, so matter how tired he is, and he still hates getting up in the morning. He hates to eat meals, hates to have his pull up changed, etc.
The preschool he goes to won't allow us to bring outside foods...a legal liability. Therefore, he can't be on his gluten free casein free diet that we had him on in Georgia. The teachers tell us about behaviours that are undesirable. Ones that went away when we kept him on the strict diet.
They will allow us to keep him off of milk, but still feed him foods that contain dairy.
I give up.
I know what you are thinking...what an awful mom.
But understand this: he does not have MILK or dairy at home. He does great that way, but they won't let us provide non-gluten food alternatives at his private preschool. but i can't not work, and I work during the day now...what can I do?
I'm also struggling financially (when am I not?)
I took a 10K pay cut to move back to Ohio. Paul's able to get caught up nicely due to the fact that his rent is no longer anywhere near what it was. my bills have not really changed too much. I don't make enough money to pay all my bills and buy the groceries I once enjoyed providing. I am at Paul's mercy. So if he wants chips and pasta, that is what we have to eat! However, I am glad he is providing food. I still try to buy clothes and toiletries and pay the phone bill.
It looks like I better get another job, though.
Which will take away my time from G. Which does not make me happy.

I may go back to school since my job pays for tuition, but it won't defer all my loans, just 413.00/mo of them.
I can't even pay it now.
I have started to sell stuff.

So, at least there is good news, yall!
In Georgia, I had to hold a fundraiser to get G's care started.
Here? nope...I can afford the co-pays AND I get 90 visits a year of OT/PT, AND>>>>>
we have an appt with the excellent Autism Center here which will help us figure out more of what we can do at home to help G succeed. AAAAANNND G gets OT at school now. AAAAND we love our IEP team.

So....moving to Ohio which now has mandatory coverage for Autism if you are insured... was the best thing ever.
And though I am broke as a joke, my health is slowly improving. my labs are getting better.

xo
more soon.
and thank you!!!!
gonna go hug my boy now.

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.