Reasons not to mess with a Special Needs mom (found on Facebook)

The majority of these, if not all, fit me. :)

1. Some of us have given up on social skills and don't care what we say or do.

2. We're not afraid to have A serious "meltdown" of our own.

3. We are tired and all the patience we have is for our kids.

4. We have A far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.

5. We can get you in a hold/lockdown position in less than 3.5 secs.

6.We can shoot you a look that would make a linebacker tremble in his boots.

7.Chances are it's been awhile since we've had a full night of sleep and that will give us a reason to plead insanity.

8. Our tolerance and patience is for our kids who didn't choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.

9. We're probably already on edge and it would be stupid to push us over.

10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?

11. We've had to fight from the moment of our child's birth so by the time you piss us off we're seasoned battlers and could win a war.

12.We devote our lives to our children and don't need more stress and people who don't understand our life.

13. Wherever there is a cub, there is a mama bear...We're always watching

Pretty Graphs

Continuing the Dr K. appt prep work... these include the data from Alpine for January and the first 15 days of Feb.

Can't argue with the data.  Going to be a VERY interesting appointment. In spontaneous manding (requesting) Dominic has seen a 65% improvement since June and in spontaneous tacting a 48% improvement since June.

apparently its been a good day. :)

So, first, Dominic is now 7!  His birthday was Saturday and we had a chill day including dinner that he got to eat with NO restrictions (we challenged all his allergies).  There was both dairy and gluten involved, and we had no immediate brain fog/hyperactivity/diarrhea!  Quite impressive.  He had one round of non compliance Sunday morning that Rod thinks could be dietary infraction related, but I don't.... i think he was just enjoying playing with his new toys and didn't want to go brush his teeth.  So we'll see.  Certainly lots of changes from the last time we tried a dietary infraction.  (this is something that the unique healing author really wanted us to try a while back, she thinks that we've got enough healing done in his gut for the sensitivities to be lifting.  Maybe she's right. Go figure)

Dominic had his 4th NAET session on Sunday.  Here's a better version of the link to the study I tried and failed to post last time.  Its midway down the page.  Dr A got very excited because the yeast protocol she used on Dominic last time stuck.  Mold came back, so they're flip flopping, but since Mold and yeast are so interrelated we both expect it to take a while longer to get rid of the both.  Once both are gone, we expect much faster results.

seriously, for as long as we've fought yeast, if NAET treatments can make it go away in a month, I will send this lady as many clients  as I can.  She is the most amazing combination of Chiropractor and true intuitive energy healer I've ever met. Which is why she's so good at allergies.

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Speaking of results...

January thru 1/23, Dominic averaged 121 mands per day,  the first week of Chiro visits he averaged 130.75 mands per day and the past 6 class days at Alpine (so last week and today), he averaged 169.5.

For tacts, Jan thru 1/23 he averaged 120.  The first week of Chiro he averaged 139 and the second week of chiro he averaged 139. 

So we've seen a much bigger increase in requesting (interactions!) than we have in labelling, So thats interesting.  Both have gone up measurably. 


A year ago, he averaged 60 tacts and 78 mands for the same time period.

Today, Alpine got a 7 word sentence out of him.  He said, independently "I want to race: Ready, Set, Go".  My mom called Alpine to check in for a tax document and the receptionist told her that SHE'D seen an increase in verbals in the last two weeks.

So for now, I'm thinking this crazy Cranial Sacral / NAET thing is pretty awesome. :)

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And speaking of NAET.  We went out to dinner for Dominic's birthday 3 days after she used NAET to clear me of my allergy to perfumes.  We were waiting for our table when a guy came in DRENCHED in cologne. I could smell him from 20 paces.  It was awful.   But i didn't get a headache.  First time I can remember smelling perfume and not needing an antihistamine to combat headache/swelling.  Very Very Cool.

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After we got home from Alpine today, Dominic sat down (!) with me to write his name on 19 different valentines.  I did have to help with hand positioning  / provide stability, and his writing is ATROCIOUS!  But he did it! he wrote his own name  19 different times.  This is the first year that he's been able to help write his own valentines.

I still can't tell you what NAET really does...

But I feel great!

Here's a study of NAET effectiveness in treating Autism.  Very interesting...  I'm printing a copy for Dr K.

Working on the Dr K paperwork for our appointment the end of this month... Should have data throught Feb 15 to graph up this time next week.  When we saw him in July, the supplement list included 31 different supplements each day.  Now it has 10.  Thats a MAJOR shift.   Its going to be interesting to see how Dr K (and his nutritionist) feel about this.  Given that they make money off their supplements, I'm going to need to be very careful how I approach it.

Based on the last Data we received from Alpine (which was midway thru January), i think the data is going to show that his verbals have improved by 25-30% since June.  We shall see. :)

IEP's and Dentists, oh my

Its been a whirlwind week.

Tuesday, Dominic went to the dentist for a regular cleaning. No cavities (yay!).  And he was calm/compliant enough for the dentist to get xrays.  This is the first time he's had xrays in a nonsedated form (they did them when he had the surgical cleaning a little over a year ago).

Today,we had Dominic's IEP meeting.  No suprises, still planning on him being full day next year at D11.  He'll have the same para he has today for mornings, and a different para in the aftenroon.  So a full time 1-1 para.  Which is good.  He's getting 240 minutes a month of Speech therapy (an hour a week, split into a couple of sessions depending on their staffing next year), and 30min a month of OT.

Verbals are seeming to be a bit higher this week than last.  Excited to get data next week to prep for the end of month doctors appt.  WE're continuing to do Chiro/NAET/Cranial Sacral, and also are very interested to see the data from that.

Funnies

Last week, Dominic;s therapist got a 6 word sentence out of him... They were playing on the swingset, with her pushing him and she asked if he wanted another push.  And he said: "No, I want to push you".  So they switched places and he pushed her.

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We kind of missed the stage of development that my mommy friends referred to as "potty humor".  So with these Toy Story wall stickers that Dominic has to name Every night, there is one random one that he very deliberately placed directly under the elephants butt.   (Dominic has a Dr Seuss room, complete with a giant Horton on one wall).  When I ask him who that one is, he says "poop" and then laughs.  I think we've hit the potty humor stage...

Alpine funny plus Mom gets Cranial sacral / NAET

funny story from the Alpine pickup.  Dominic's therapist told me with huge eyes "Dominic did great! we walked across the hall at snack time and without me even promping, he independently said "I want pretzels for snack".  I was so happy i picked him for tickles, and he looked at me with a very confused look on his face and said "pretzels!"".  The insider funny to this is the pickup/tickles is one of the reinforcers the Alpine staff uses with Dominic, and sometimes so are the pretzels.  So he asked for pretzels and got a tickle.  And he wanted pretzels instead.

I took myself to the cranial sacral / Naet / chiropractor that Dominic went to on Saturday today.  I have seen a chiro off and on for probably 15 years, and he retired suddenly last year when he injured his shoulder.  It'd been at least a year since I had an adjustment.  She gave me probably the most thorough physical exam I've ever had (reflexes of every joint, flexibility/range of motion of most of my joints, and pain levels from a paperclip poke on each side of the body to determine balance), and then the gentlest adjustment i've ever had.   We talked in depth about my allergies, since the NAET is a big reason I'm going to her, and her first question was when did I notice them.  They started when  we lived in the (very humid and damp) Ohio River Valley.  While i don't specifically recall mold, the schools we went to were extremely old as was the house we lived in, so i'm sure there was some.  Mold was the thing i tested most allergic to in the blood tests I had done last fall and it turned out to be the thing i reacted to most with her muscle testing evaluation.  She theorizes, and i don't disagree, that I got overrun with mold spores when we lived in Ohio and they've adversely affected my immune system, causing these sensitivities to so many other things.  Including the majority of the foods that Dominic has blood tested allergic to (wheat, eggs, legumes....) according to her testing.  So we started with her using the NAET principles to clear the mold allergy, and she believes that there's a good chance the rest will clear after that goes.  So interesting.  I have no earthly idea how this all works, but I know far too many people who completely disbelieved NAET and ended up with their allergies (in some cases anaphylactic) gone.  

Anywho, she was THRILLED to hear about the shifts we've seen in Dominic (see yesterday's post) just from the "very little" she did on Saturday.  i think we're scheduled to start the allergy stuff w/Dominic this saturday.  We'll see. 

Update on Dominic / Cranial Sacral

I've been playing with numbers and data again.. I'm going to see the Chiro tomorrow for myself, and wanted to be able to tell her exactly the changes we'd seen in Dominic since the first CS adjustment on Saturday. (the chart tracking averages is now WAY to big to post on the blog, but i still keep it)

1.  Based on Data From Alpine.. verbals averaged from Mon-Wed sessions at alpine this week are up from last week, as follows:
Last Week's average:  Mands: 108 / tacts 105
This weeks average:  Mands 119 / tacts 148
I will qualify this with the fact that Monday and Tuesday were much higher than today at Alpine.  So this is something we want to watch longer term than just a few days for accurate trending.

2.  Negative behaviors are heading down.  I dont have exact data yet, but will by the end of the month. Therapists are all reporting much lower instances of head hitting (today there was 1, yesterday 3) which is nice.  He does seem to be reviving some old ones (like biting), but he tends to do this as he eases out of behavioral patterns - bring up old ones just to check and see if they're still not acceptable.  So i'm not terribly worried.  I have not seen him bonk his head since Sunday when I saw it once.

3.  Focus has improved at home significantly.  He has spent way more time independently (eg, without the dog), playing outside in the last 4 days than he had in the entire month previously.  He's also been suddenly enjoying sitting quietly on the floor playing with his toys without any background distraction (eg a movie).  This is a huge shift.  He played for an hour and 15 minutes today before he brought over the movie The Incredibles and asked to watch it.

so, we'll see.  Too early to get excited, but these are all nice to see.

Cranial Sacral...

I'm a firm believer in paying attention to what the universe offers me.  So this is why, after several weeks of Dominic bonking himself on the head for no apparent reason (to the extent that Alpine's about to add it to his behavior service plan), when my friend that i've worked with for 14 years sat down at my desk on Thursday and told me that the chiropractor his whole family had used and loved (who coincidentally does NAET and got rid of his bordering-on-anaphylactic allergy to hay) had opened a practice in Colorado Springs (they live about an hour south of here...), I paid attention.  I called her, found out that not only does she do chiropractic and NAET, but also cranosacral adjustements, and made an appointment for Dominic for this morning.

This doctor actually got off the phone with me Thursday (after I'd given her a good 20min cliffs notes version on Dominic) and pulled out her grey's anatomy book to plan strategy.   Color me impressed.  She has been looking to expand her practice into the ASD kiddo world (she read Jenny McCarthy's story and said - Hey, I can help these kids) and why my friend's wife told her about Dominic, she really wanted to see him.  So win/win for both of us.

Anyway, after she did the cranial adjustment - which looked like gentle head squeezing (and by the way she said both his head bones were significantly out of alignment), i mentioned the recent head hitting stim, and my theory he had a headache and bonking himself was blocking the pain.  She felt his neck alignment and said "I agree with you" and promptly adjusted his neck. I have not seen him bonk himself since.  What i hope, is that this was such a new stim (and everyone's response to it has been to blatently ignore it so that we didn't reinforce the behavior) that he hasn't had time to ingrain it past the pain blocking stage.  If so, its likely we won't see it again.  Which would be nice. Its very disconcerting to see your kid make a fist and hit himself in the head relatively hard.

Other immediate changes - he's been MUCH calmer the remainder of the afternoon.  He spent a good hour playing outside (some walking the dog, some actually swinging and sliding).  I dont' see additional language today, but we'll see how the week goes.

She and I both want to do one big change at a time, so we are going to add the NAET / allergy work in next week.  If we can eliminate his allergies I'll be ecstatic.  We've set up a standing appointment for Saturday mornings for a while

(and yes, i'll be going to see her myself as well.  Both for chiro and NAET.  I'm excited.  Appointment for me is Thursday)

Monthly Alpine meeting...

So every month we go to a parent meeting at Alpine where we meet with Dominic's lead teacher, the program coordinator and the last couple of times (they transitioned between coordinators) a second coordinator to ensure smooth transitioning.

Today was our January meeting.   He's doing great - high points - we are not crazy, he is doing more sentences.  He's averaging 9.4 sentences (3 words and up) per day on average (have i mentioned that i love data?).  This afternoon when i picked him up, he said "i want tie my shoe", so i got a 5 worder out of him.  Definite progress.

All of his programs are going well - he is now using a knife to appropriately cut slices of play doh, and so tonight i had him cut his own chicken. And he did. 

Negative behaviors are primarily down across the board from last month with the notable exception of the new behavior that we noticed starting over the winter break - hitting himself in the head.  From what alpine has for data points, he's doing it as an attention getting mechanism, and so we need to work to give him language to do that instead of needing to bonk himself. And the appropriate response is to completely ignore him when he does it.

We have our IEP with D11 coming up next week and we'll be focusing on ensuring we have a good set of goals mapped out for the transition in August to full days in public school.  So hopefully that will go smoothly.

Oh, and the Alpine Autism walk is now on the Calendar for April 21.  They were not overly happy when I told them that this year I wasn't planning on doing major fundraising since I hit all my friends, family, acquaintances, imaginary friends from the innerwebz,  random people i met in the street, etc up in August for a big fundraiser for Dominic.  However, we will be walking and would love company.  So if you're local, please pencil in the date.  If you walk on Dominic's team, you get an awesome button with his face on it. :). If you are not local, and want to do something to support this, drop me a comment on this post and if there's a handful of you, then  i'll set up a fundraiser page. 

Thats just cute.

One of the things Dominic got for Christmas from some old friends of ours was a set of Toy Story themed wall decals.  This month has been ridiculous, so we finally had time with all three of us home and awake and not busy on something else this afternoon to put them up. 

Dominic LOVES them. They're in his room, all at his eye level.  He put up the smaller ones (they're like stickers, and with the bigger ones around a foot long, folding over and getting stuck to themselves was happening easily), and showed me where to put the bigger ones.

Tonight, at bedtime, he went around his room and said good night ____ to all of them.  The pig (which says ONK ONK), the horsie (then he neighed), the dinosaur (and he roared), mr potatoe head, Woody, Buzz, Jessie, and all the stars.  It was asorable.  Time will tell if this is a new required bedtime routine.

He also, after we put all the stickers up, retrieved his stuffed woody doll, and proceeded to carry him around the remainder of the evening.  Including sitting him down on the table at dinner. 

Primary care doc check up

We had to get a physical signed by the doctor for Dominic's Alpine paperwork, and today was the appointment.  Literally a matter of height/weight/doc signature.  Sort of silly, but I digress.  It'd been a year-ish since our primary care doc had seen Dominic and she was entirely floored at the improvements in his focus and verbals.  Very impressed with our protocol and Alpine's work.  :)  I like appointments like this.

And now after a 3 week hiatus.....

Sorry its been awhile since I've blogged.  Life got in the way in the form of me getting very sick and I just didn't have the energy to write anything up.

Dominic's doing fine. We're all ready for Alpine to start back tomorrow and school to start back Thursday. It'll be good to get back into routine.  We had a lovely holiday - much quieter than most years because of my illness, but lovely none the less.  No ornaments were broken, primarily because we only put non breakable ones up this year. Dominic loved the tree.  Dominic seems to be talking a decent amount, he actually said hello for the first time to a friend of ours who dropped by yesterday.  With eye contact.  He handled me being hospitalized pretty well - which was good for all parties involved.

We did not get the grant we applied for to help with Alpine costs, but are back in the hopper for next quarter automatically.   Not holding my breath, I'm SURE a ton of people apply.

Tonight I'm feeling inspired to say thank you to those of you who've continued to stick around, read these oftentimes distressing blog updates, and actively insert yourselves in our lives.  I realize that its oftentimes extremely difficult to wrap your heads around the knowledge that Dominic was fine one day and he was not fine the next.  And that he was 3 when it happened, and from what we now know, it could've happened to anyone.  Especially those of you around to watch the regression as it was occuring - I get that its uncomfortable and horrifying and hard to remember how he was before and compare it to now.  I live it.  I know that I'm not the most sociable anymore - I don't have time or patience to be tactful / superficial / whatever, so those of you who have hung tight - you have no idea how much that means.  Those of you who find it uncomfortable to be around me because it could've been your kiddo - I get it.  Or because I'm too intense now, or because you don't relate to my reality now, etc - I get it.  I may miss you tremendously, but I understand.    And those of who I've met on this journey, who are on the same road - I don't know that I'd still be sane if I didn't have you in my lives.  Thank you.