Life lately.....

Wow!  It's been nearly two months since my last post.  School started and everything changed so this is just an update to what's happening on Normal Street.  Bernie is doing great in first grade.  He loves school and is included nearly all day in the regular classroom and seems to enjoy every minute of it.  He's only out for OT, Speech, Social Skills and the occasional meltdown.  He has one on one help nearly all day long and the communication between me and his ASD support teacher is ongoing on a daily basis-sometimes several times in a day via email.  I like how his teacher's classroom is all about Clifford (the big red dog) and nothing else.  The walls aren't plastered with crap and I think it cuts down on distractions.  Tomorrow I attend the meeting to fight for his one on one help hours and I don't plan to do much negotiating.  I think he needs every second of it.  He still has some issues transitioning from preferred activities....playing soccer to lining up when it's time to go, or erasing an answer that's wrong.  He's also participating in extra-curricular activities.  He has a recreation group for all first graders after school on Mondays, is starting a social skills group at a local psychologist's office, and will have his first yoga class through the NW PA Autism Society this week.  He loved the yoga class he attended this summer.  Plenty for a 7 year old!  Way more than I ever did as a kid at any age!  We're lucky these things are available and that we're able to do the running.  Last school year he had in-home after school help but this summer we decided it wasn't necessary so that's a step in the right direction.  His lazy eye got stronger from the OT Vision Therapy he did all summer so we're no longer doing that and he's happy to wear a patch at home.  All in all, the B's doing great.   We nearly lost him at Walmart the other night but that's another story.

Clark!  What a kid!  For the last two years he rode a bus a total of three hours a day to a full-time specialized pre-school with full-time one on one help and had after-school help at home.  All of that is different thanks to us attending the Son-Rise Program and finding courage.  He is now attending a part-time general special education pre-school right up the road.  He's home with me in the morning, and goes to school four afternoons a week.  This is PLENTY for Clark.  We are supposed to be getting five hours of after-school help but as of yet they haven't found anyone to take the hours.  They would be helpful around meal time, but they think meal time is strictly a parent's domain (some of his biggest issues and where we could use help the most are at mealtimes, but what can you do.....)  Honestly, it's been really nice to not have a revolving door of people in our house.  Meanwhile, I'm working on reopening the revolving door, but on my own terms.  I am working with him in the morning in the room we have set up in accordance with the SRP principles and have three people I'm training as SRP volunteers to work with him one on one.  We got the camera set up this weekend so we're ready to go for it.  The more the better with this one on one time.  Every minute of it truly results in a positive with him.  Since starting the program he is nearly pee-potty trained, he is calmer, he will sit in my lap for a longer time, and is recently tolerating his baby brother being near him.  We recently quit the OT sessions as he was becoming increasingly aggressive in the car on the way to appointments making it clear he didn't want to go....fine by me.  Two times a week all summer long did me in for awhile.  Both boys also completed the 8 week The Listening Program which they loved.  We're taking a break with that but will probably start it again during winter break.  In the next couple weeks I'm taking him to Pittsburgh for a couple appointments; one is with a neurologist to get going again more intensely with the bio-med interventions which now seems possible since he'll take supplements and eat gluten-free, and a speech evaluation at Children's Hospital.  I'm looking forward to probable additional speech dx's, but some solid terms would be good to know other than, "he's non-verbal".  He had dental surgery not long ago and I can only imagine he feels better in that regard.  I'm also in the process of adding an Autism Service Dog to the mix via a grant and dappling in ASD protocols with essential oils.  There are countless testimonials from therapists and parents using oils.  The sense of smell is directly linked to the Limbic part of the brain which is the center for emotions.  So many separate posts I could do here!

Always busy with my boys, and add to the mix Baby Grant, nearly 14 months old, vaccine-free and right on track.  He's loving his baby friends while at daycare in the mornings!  Thank you, God! 

Loogie Hacking: Part Two

This will have to be a quick post as they all have been, because time is as precious as always.  The hacking/throat-clearing thing has gone on since March.  Reflecting, there were a few things which may have spurred it but of course none of them are obvious causes.  At that time we took him off an anti-psychotic medication which can help with repetitive behaviors.  It didn't help with ANYTHING that was obvious or intended which for me was increased attention that would aid in speech development:  I just want this kid to talk!  Instead, it had a common side effect of increasing appetite which resulted in behaviors of digging in the refrigerator and garbage.  Also, at that time we went gluten-free and the season started changing.  Any of these things could be the culprit for the tic of throat-clearing.

So we let it drive us crazy for awhile then tried joining him mimicking the behavior and then trying to be internally okay with it and ignoring it.  None of these made it stop.  Eventually, I had his blood drawn to check strep titers to rule out PANDAS, a Tourette's kind of deal with throat-clearing being a common thread, and hit a dead end there.  On our car ride to the National Autism Conference a few weeks ago, it was 90+ degrees and we hit stop and go traffic over and over again, and the throat-clearing happened over and over again.  It was really irritating so every time he did it we told him to "STOP!" or "Don't do THAT!".  Every time we made this request you wouldn't hear it for a little while.  And then I had the realization that throat-clearing isn't like burping or sneezing or farting;  it's a choice!  Even IF you have mucus issues, you can simply SWALLOW!  Even if you have mucus issues, it's not something that would make you make this LOUD NOISE constantly throughout the day.  Who does that?!  So we were on to him when you wouldn't hear it after we asked him to quit.  We are super-consistent with this request and the behavior is MUCH LESS!  It happens a few times throughout the day instead of many times per minute.

He was starting to spit into his hand when he did it and I noticed the clear mucus in his hand.  So there IS something there, but I certainly don't want the spitting to happen or for it to go beyond that.  All the time, I hear about kids who can't communicate who spit....spit at their caretakers, spit and play with it, etc.  NO THANKS!

 I started giving him a homeopathic remedy for mucus and I'll just have to trust that that helps, but nonetheless the mucus is still there.  I notice him swallowing hard a lot.  Yesterday, we had an appointment at an ENT and the doctor said nothing jumped out at him as a problem and that everyone produces a half-quart of mucus daily!  He prescribed Precavid, an acid-blocker, generally given to people with acid reflux.  I did try Tums many moons back and I told him I was giving him digestive enzymes.  He just shook his head.  We talked about food allergies a bit and he said it was all experimental.  I seriously get tired of regular old doctors just giving a med to mask a problem and not paying much attention to the underlying issue.  Anyhow, that's where a homeopath would be useful.  That's where winning the Lotto would be useful as insurance doesn't pay for that.  So I get the prescription and start reading about it on-line, and I read that it has caused many behavior issues such as waking in the middle of the night and hyper-activity.  These are both issues we've been there done that with with Clark and we aren't going back.  I read about natural remedies and sure enough digestive enzymes are one that will help (if this is EVEN the issue!) so he's NOT getting the drug and I will keep on keepin' on with what we're doing with diet and behavior modification.  And so it goes.....