Saturday, February 17, 2018

Caregiver Fatigue.


I wrote the below Thursday evening, and I was well and truely tired. I told my husband "I am weary".  I told my online friends I was too burnt out to even answer a question from a newer mom about learning how to muscle test.  I hit the line in the sand that tells me I have caregiver fatigue.  An energy work session, therapy session, and 2 footbaths later I am less fried and now sharing my thoughts from the other night.  As caregivers this is a spot we have to be very mindful of because if we don't keep ourselves together, we won't be able to take care of our kids.

~~~~~

You all may have noticed that I’ve taken some steps back from my online presence of late  - I’m blogging less, I’m in fewer facebook groups, I’m mentoring much less, I’m posting stuff about me WAY less.  I’m just plain weary.  Its beyond tired, its fatigue to the point of tears from a kind word. Its physical manifestations of tension - I’m currently getting PT for tennis elbow (having never played tennis in my life – and Chiropractic and Massage were not resolving, so at 2 months in I asked for a PT referral), and they’ve decided that my incredibly tense traps are part of the problem so now I get dry needling or cupping done… and it hurts a ton while it happens, but the next day – my neck doesn’t hurt.  Let me rephrase that – this last year my neck has hurt so much every morning that I’ve had to go straight to pain relief sprays and meds, and in fact have purchased something like 8 specialty pillows in the last year – none of which fixed it.  Regular Chiropractic and massage didn’t help that either.  So, now I’m a pincushion 2x a week.  And the root cause is the level of tension in my trapezoids (shoulders)

So Why am I writing this?  Couple of things have this on my mind today.

I had a conversation with my Chiropractor this evening. He’s a special needs dad – his son has severe CP and is wheelchair bound.  We had a conversation about how the general public doesn’t understand the level of exhaustion that comes with special needs parenting and that in some ways he thinks parenting Dominic – who has a completely healthy and functional body, and damaged cognition – is more difficult than parenting his son who has a non functional body and incredible cognition. People see his son, the chair, and they help.  People see Dominic and assume behavior problem / inadequate parenting, and they point.  They don’t offer help.  Autism is in many ways an invisible disability.

This week were our annual renewal meetings for both the Medicaid waiver that pays for most of Dominic’s therapy (and my second job, as his 21hr a week CNA) and The Resource Exchange family support program, which gives us funding for things like respite care.  Both of those meetings were yesterday.  Both were over an hour long, and both were emotionally grueling.  One of the things we have to start thinking about is what we do the day Dominic turns 18 – do we petition a judge for full guardianship?  Do we get power of attorney?  Do we do nothing?  Do we get Dominic SSDI and start charging rent for him to live here?  Do we find him a day program or a job?  Its heavy stuff on top of an already heavy burden and there is absolutely nothing anyone can do to carry that burden for us.

So what do I do about it?  I do at least one self care activity a week – massage, pedicure, chiropractic.  I’ve been seeing a therapist weekly for years who helps me manage the anxiety (yes, all of this comes with a huge level of anxiety about how the world will treat Dominic, how or if Dominic will manage to live independently, will he end up developing full seizures, will he get assaulted at school and not be able to tell us…. That’s a rabbit hole), I’ve joined a spiritual group of like minded women that meet regularly and have ZERO to do with autism.  And I’m making choices to spend more free time outside the autism world than in.  That means that maybe instead of going to the Autism Conferences, I choose to go to women’s retreats. Or instead of spending hours on the phone mentoring new autism moms – I read a book.  Its a weird mindset for someone who has been so active in the autism community, but what I’ve realized this past year as I’ve been slowing stepping away from it – Dominic does better in general when I am not immersed in all things autism.

Its that whole manifesting our thoughts thing. If I focus on Autism, I get autism. It makes me realize that the moms who blazed the trail before me but aren’t around much anymore may be onto something.



~~~~

 No, this does not mean I am stepping all the way out of the community. It means that I've recognized that full immersion is not healthy *for me* right now. 

Monday, February 12, 2018

Teenagerhood, we have arrived....


Yesterday was Dominic's 13th birthday.  We have a teenager!!!!
We had a really hard time figuring out both what to do and what to get for him because he's a complex mix of physically /hormonally teenager and cognitively maybe 4-5ish.  It complicates matters.

So, we decided to invite the one friend he seems to have made on his own  - a fellow therapy recipient from Shandy Clinic on Tuesday nights, the same family that took Dominic and I along to see the lights at the Zoo right before Christmas.

We met Kane and Jayme at Chuck e Cheeses.  One thing (potentially the only thing) that I appreciate about Chuck e Cheese is that when you walk in, the child and all related adults are stamped with an invisibile number,and you can't leave with a child if you don't match their number.  So its a safe place to give him some independence.  All adults basically spent the time sitting and waiting for the boys to finish the allotted hour of chaotic play.


They did so well.... no meltdowns, no frustration, lots of smiles.










At one point I looked up and they were turn taking at basketball, so I played papparazzi mama and got this video without them seeing.  Spontaneous turn taking, cooperating, communicating.  Its AMAZING.  I promptly texted it to the majority of his therapy team and everyone was Mind Blown.




After the hour at Chuck E Cheese (seriously couldn't take much more than that), we went to Red Robin where Dominic drank at least a gallon of Strawberry lemonade and Jayme  got to see what he's like when we aren't strictly staying away from dairy (he got a birthday sundae).  She was duly impressed at how much control that diet alone gives us. Its a beautiful thing....




Since we had drawn such a blank on what he might like, we decided to give him a Toys R Us gift card and let hgim go shopping on it. It was really fun, and he was so overwhelmed that he stopped before he used all his GC up...

In a funny footnote, my parents sent him a Chewebacca tshirt that arrived today.  He opened it when he got home from school and I asked him what it was.  He proceeeded to give a better than passable Chewie growl... 

Thursday, February 1, 2018

Holy handwriting Batman!!!!!

Dominic‘s second home based occupational therapy appointment of the week is always his fine motor appointment. I told this therapist when she started in December that Dominic needs a signature, and that I want him to learn how to have a cursive signature. To her credit she did not look terrified like everyone else I have said this to over the last few years has.

They have been working on this using a highlighter and having Dominic to trace the cursive that was already written and highlighter. Well yesterday Miss Alyssa brought over those old-fashioned worksheets that have the dotted line in the arrow showing you how to use cursive.




He did a wonderful job of independently using a pen and tracing those dotted lines. So then we asked him to do his signature in cursive on the bottom line they did not already have his name in dotted lines. What is so interesting to me about this is he started by printing his name then he went back and attached the letters together and what looks like cursive. That was such a giant cognitive Leap that we were slack-jawed.





Then We turned his piece of paper over and asked him to write his name in cursive. Actually we asked him to do it twice, this first time I caught the video roughly halfway into it and he did better than he had the second time. The for a child who technically still can’t print on a regular sized lined piece of paper is rather remarkable.  




And here’s the third video






Wednesday, January 31, 2018

Wow it’s the end of January

Catch up post…

 

 

So – I am finding it harder and harder to sit down and write out whole blogs about how things are going.  They are going overall relatively well.  Dominic is almost 13 and having teenager attitude regularly. He eats everything that’s not nailed down. We have 5 sessions of various therapies a week – 3 OT and 2 ST.  The speech therapy is in the mornings before school and going very well. Occupational therapy is Monday and Wednesday after school at home, where we are focusing one day a week on cooking and the other day a week on fine motor with a big goal of being able to write his name in cursive.  Tuesday after school we go to clinic based OT at which they are working very hard on reflex integration with a therapist who has Musgatova training.


 

Protocol wise, while our foundation hasn’t changed (Ioncleanse footbaths and prime my body hemp oil),  we continue to branch out. I saw a wonderful article a month or so ago about reducing androgens herbally, so we’ve been giving that protocol a whirl. We are noticing calmness, and significantly more attempts at back and forth conversation out of Dominic. We’ll take it. 

 

In the mean time, there’s a new product that some of my close friends have been testing with their kids.   And its been pretty amazing, so we are gearing up to give it a try here.  It actually arrives Monday, so I need to make some freezer space before then.

 

Dominic is continuing to “earn” money by doing chores. He now has mastered cleaning up dog poop – I had him rubber gloves and a bag and tell him to go pick it up, and without supervision he does so. Next one we are working hard on is vacuuming. He hates it. But he does it with significant verbal prompting.  He gets to earn dimes in all his therapy sessions and at school.   We had homework over the last weekend (it was momentous as he rarely has been given homework due to his quantity of after school intense therapies).  It involved adding up dimes.  It was perfect. What we are hoping to get to is both math (multiples of 10), the concept of earning money and the concept of saving. We are getting there. 

 

Dominic now cooks dinner for the family every Monday night which is going rather well. I’m writing out in small words the instructions and he really does stay focused on them. I believe he’s reading them at some level, but he struggles hard.  So we keep at it. He is quite proud when he produces a meal. It’s really cute.

 

We are making big summer plans… as Dominic has aged out of the YMCA camp he’s gone to, we’re hiring a “nanny/companion” for him for the summer who was one of his camp counselors last summer. She and he will hang out about 5 hours a day (from when Daddy goes to work to when Mommy gets done with work) and do things like the zoo, go swimming, go hiking, walk the dogs, etc.  Basically her job will be to keep him active and busy.   I’m excited and apprehensive because I want him busy and having fun, but I’m sad that he won’t have the intentional socialization which is what I liked so much about the Y.  It means that we will be looking for socialization opportunities and scheduling them as often as we can.  



And hey look - he is tall enough to do the laundry!!






Sunday, January 7, 2018

Earning Money... day 1

We kicked off our "chores for dimes" project today.  Here's how it went.

This morning I asked Dominic if he'd like to pick up dog poop for some money that he could save to buy toys with.   He commenced with this:



When  he came in, he excitedly asked me for TOYS. I gave him thirty cents.  We took it to the toy bins... nothing is less than $2.  I told him to get his piggy bank and take everything out.  We counted.  There was $17 in the pig.  I told him he could buy a toy with that if he wanted.  He didn't.  He wants to save that money.  He then got his shoes on and  said loudly "SHOPPING"... Sorry kiddo, you only have 30 cents...

He then went to the chore chart, in the dining room and pointed.  Yes. He picked the one weighted heaviest.  Fifty cents for washing the windows and mirrors.  This happened:


He did a passable job, then washed the dishes, picked up poop again and helped me clean the duck pond.  He ended up earning $2.  But he wants a more expensive toy... so he is holding out until tomorrow.

I'm so surprised on a couple of counts
1.  That he's not going for instant gratification
2. That he didn't cheat and spend his piggy bank
3. That he did all the things!!! I mean really, I had to supervise significantly, but he did all the things!!! I'm exhausted

Tomorrow he will have the opportunity to earn up to a dollar working during OT, and i'm betting he'll do a few chores too. 



Saturday, January 6, 2018

Kicking off big plans... and some updates

A bit before the holidays, our new home based OT and I cooked up a plan by which Dominic would have the opportunity to earn coins (dimes to be exact), during his therapy session - for listening, working, and behaving.    We figured that we'd give him some small bins of small toys to "buy" in varying amounts and we hoped that he'd be able to get the concept of earning, saving, and budgeting while reinforcing good work in session and some math skills.

Over the last couple of weeks, i've tested the waters a few times with chores.  Vacuuming and putting the dishes away specifically.  He can do them with lots of support.  (Seriously, 90 minutes of 'you missed a spot', 'nope, you're not done'... etc). We have decided that Dominic will be able to earn coins for chores and such as well as in therapy.  So i've made a chart, cleaned Walmart out of their clearance toys that looked interesting for him (as well as coupons for things like "trip to the movies" and "dinner out") and put them in bins labelled $1, $5, $10, and $20. 

I've hung this sign in the dining room.




And We are kicking off Monday

In what I term a good sign, when I showed Dominic the sign and asked him what it was for, he replied with a cheery "Toys!"

~~~~

We survived Winter break pretty well. Its the first year that I took the entire school break off work to hang out with Dominic and I'm astonished at how relaxed i got.

~~~~

Braces update:  All of Dominic's adult teeth Fit in his mouth!!! And they are all in.  So, the orthodontist was able to do what the dentist deemed impossible, and make room in his upper palate for his adult canines.  His bite is almost top on bottom (instead of very underbitey) and at our next appointment, we're adding rubber bands to continue to pull that top jaw forward.  Thats going to be an interesting experience....  But, he's done so much better than I anticipated for this entire journey that I'm confident we will get him there.

~~~~

Thursday, December 21, 2017

What a Rollercoaster Month...

I know, I know, Its been a few weeks, AGAIN, since I posted. I seem to have lost my oomph for regular blogging and hope to find it again soon. Maybe its under the sofa?

Anywho...  from my phone and facebook, here's whats happened since then...

December 8, we decorated for the holidays. As is our usual tradition, Dominic wrapped himself.




December 9, we went to the annual CC vs DU hockey grudge match game. Dominic had been asking to go since the one we attended in November.  He loved it, and was a bit more rambunctious than the first, so future games are back to a maybe.  He was very concerned with ensuring that his toy hamster, now with all the paint rubbed off it, made it into each photo...






December 13 was the choir concert. Dominic did a GREAT job of standing where he was supposed to the entire time.  He might have sung three or four words.  He didn't need the para who was there for support except for the whole parading on and off the stage thing.  We went out for sushi after to celebrate his first ever school extracurricular activity.  Also, how handsome is he all dressed up :)






At our center based occupational therapy place, Dominic has made a friend.  I took this picture November 7, and it knocked my socks off. We had walked into the clinic and this little boy asked Dominic to play. I was nonplussed.




Since then, I've gotten to know his family and they invited Dominic and I to join them at the zoo's electric safari Tuesday after therapy.  We had a lovely time, and have made plans to get the boys together again.  Dominic is a little older than Kane and they get along beautifully.














We have finally, after waiting something like 6 months and having one false start, landed with a new home based occupational therapist who will see Dominic twice a week.  She and I did a brainstorming session last night and I'm super excited to ramp up with her in 2018.  he made our dinner with her on Monday.  Chicken soup.  It was wonderful and he's going to be cooking something every Monday




Last night we had OT with Miss Alyssa again.  One of my desires is that Dominic have a signature. In order to have a signature, he needs to learn cursive.  Miss Alyssa is the first teacher/therapist/etc who has not winced when I said that. This was Dominic's first exposure (tracing on top of the highlight) and look how well he did.




Do any of my teacher friends have access to the old style cursive learning tools where they have all the arrows showing you how to go?   If so, can you hook me up?

We also talked about the big picture, the things we need to teach Dominic before he can live independently. We decided that one day a week will be a cooking exercise and one day will be a fine motor exercise and we will come up with some sort of rewards chart that lets him earn coins both nights... and he will be able to SPEND those coins on a small toy, or save them for a large one.   We're hoping to get some math organically, but more importantly start money management and the concept of earning / spending.

If you had told me a year ago that Dominic would be going to hockey games, having school choir concerts and cooking me dinner, I wouldn't have believed you.  The progress we've made this year is unparalleled.  I attribute it to the combination of the Ioncleanse by AMD (which we will never do any less than 3x a week), Prime My Body Hemp oil, appropriate genetic supplementation,  and the persistence of an incredible team across the board - from MAPS doc, to regular chiropractor, DO,  ST and OT's ... I am so pleased with the supports we have in place and actually am allowing myself to be excited about what 2018 will bring.

Wednesday, December 6, 2017

Catch up post

Because I am way behind ...

I've been busy and we've had computer issues, so  between those I haven't been able to post since the Hockey game.  Here's what I have to tell you.

~ Dominic loved that hockey game so much that every day since he has repeatedly said, in the tonation of a query "hockey, soon?".  It got to the point that his teacher wrote down what day the hockey game was in his school planner and he's been checking days off.  We have tickets this weekend. I am seriously considering season tickets next year, he's enjoyed this so much. 

~At the IEP a few months back, we put Dominic into choir to encourage him, because he was always humming along with his movies.  I completely forgot about  it until we got a note home a few days ago saying that his winter concert is the 13th.

let that sink in.

Dominic will be taking part in winter concert.  And yes, he will have a support person.   I don't know what to expect, but I bought him the outfit (black dress pants, white shirt, black shoes) at target the other day, so we're a go!  In related news how is it possible that he is wearing a mens size 8 shoe??????


~ home based Speech therapy continue to be wonderful.  Last night he did the best he's ever done for her identifying the sounds of letters (building block to reading) - he got 16, and his best before that was 12.   Every speech session, at the end, I have to sign Sarah's ipad so that she gets credit for the visit.    At one recent session, she said to Dominic "Take the ipad to your mom so she can sign it", and look what i got handed....




Sarah has a sweet little 6month old and sometimes due to scheduling, she brings him along and i get to play with him while she does therapy. Dominic likes to hang out with him too (and yes i had her permission to share this pic on social media)




~ Thanksgiving was pretty low key. We stayed at home and didn't have company.  The week off from school, tho, made apparent that puberty is here.  The sass out of this child is amazing given that his verbal skills are still pretty low.  We're all working together to provide consistency in environment and routine, and hoping that will help. 

~ speaking of puberty, I think we are nearing the stage where our grocery bill is going to be ridicuous. I bought a costco size package of organic sausages a few weeks ago (so there were 15), and cooked them in the oven. Dominic came home from school and i told him he could have one for a snack before we went out to OT.   I was rushing about and not paying attention (critical error there), and got us out the door, we did OT and we came home and I went to have him eat another ssausage before ST at home... and there were only 8 left.  I checked with Tim. He didn't have any. They weren't accessible by the dogs.  Dominic ate 7 sausages for a snack.   So...

~ Because daddy is now working full time, I'm taking the entire school winter break off work.  That will be the longest vacation I've ever taken, and I'm excited. I am also hoping that said sass and puberty don't make me insane. 


Monday, November 13, 2017

Hockey

When you have children, you assume that you will at some point get to share the fun things that you do in live with your kids. You assume that you will, as they mature, be able to play and enjoy life.  When you have a child with special needs, that assumption goes down the drain. In my eyes, that’s one of the biggest tragedies about the surge in disabled children that we see in todays society.  And if you don’t have the experience – its very hard to wrap your head around the true social isolation that comes with a disabled child.   There’s absolutely a financial component to this on top of the actual inability of these kids to do STUFF – respite care (a fancy way of saying babysitting in the special needs world) is anywhere from $10-$20 and hour and up.  The kids might be runners (who wants to put their kid on a leash just so they can go out?  So much judgement and side-eyeing by everyone elses)… they may be too sensory aversive to deal with crowds and noises… they may not have the actual ability to sit for more than a few minutes, they may be inappropriately noisy, they may be violent to themselves….. they may smell bad because they’re not potty trained, etc….   If you don’t live it, you cannot possibly imagine how soul-crushing it is to have a child who cannot be taken in public without serious ramifications. 

Most of you who have known me for a while know that when I was in College, I learned to really enjoy college hockey. I like hockey specifically in person – not on TV.  There’s something about the energy of the crowd that I really enjoy.  For the last 12 years, we have gotten childcare and gone to Colorado College  games a few times a season.   About a month ago, I floated the idea to Rod of bringing Dominic along to one of the less attended hockey games to see how he would do.  That arena is crowded, loud, echo-y and we really weren’t sure if he could handle it.  After talking about it for a bit, I bought tickets for the whole family to attend the game this previous Saturday night.  I think we both expected Dominic to manage for a bit and get bored and want to leave. 

We started the evening with a family dinner at Dominic’s favorite restaurant, and the only place in town with a gluten free fryer dedicated to French fries – Red Robin.  With the game starting at 6pm, we figured we wouldn’t have to wait at all and would have the opportunity to completely stuff him with fries.  What we forgot was it was veterans day – and Red Robin was giving away free meals to veterans. Ooops.  We waiting a solid half an hour to sit, and had no phone signal to let Dominic play with youtube while we waited. Oops.  He got squirmy and wanted to leave.  It was not a good sign on how the game would go. 


We finished our dinner, and made it to the arena in time to see the warm up.  We had relative good seats – strategically I wanted to sit as close to the ice as possible so that there were fewer people in front of us in Dominic’s general field of vision.   So we go to see pucks up close and personal J .  Every time a puck hit the glass, Dominic hooted “OW!!” and laughed maniacally.   What I’d worried would scare him, he found hilarious.



Very shortly into the game, I posted on facebook  “Might have underestimated his love of screaming”.  Because he CHEERED, he clapped, he screamed at appropriate times… it was so cute to watch.  At the end of the first period, it was apparent that he was loving it, and I bought him a shirt.  Here he is practicing his Tiger Roar (the mascot of the Colorado College Hockey game is a tiger).



At one point I looked at him and found him in classic sports watching pose, with his elbows on his knees intently watching. 



We figured we were home free at the game and what was left to determine if we would repeat the experience was how well he wound down when we left. Because he was AMPED up. 

CC Won!  There was much happy screaming.  WE came home, it was around 8:30 – put the ducks to bed and Dominic asked to watch Dr Who.  So we watched a Dr Who in mommy and daddys bed until his eyelids were super heavy and he passed out in his own bed not terribly late for a weekend.  WIN!!!!

I am so proud of how well he did, and so proud of the work we have done to help him get to this point.  So today, I’ll be buying tickets to the Big Game  - CC vs DU, in a few weeks.  And he will wear his new shirt and we will have a wonderful time.  As a family.  I cannot communicate to you what an exquisite treat it was to actually do something FUN like this as a family.  It was an indescribably large step for Dominic and us.  I am incredibly grateful for the path we  are on and  the supports that are making such a difference. 

 

Friday, November 10, 2017

Lots of gains

Time Change week, and a  couple of weeks worth of updates at once

 


I was not planning on it, but at the last minute decided to take Dominic trick-or-treating. It’s been many years since we have attempted this and so at the last second I grabbed all of the Dominic safe treats from the kitchen and preloaded the neighbors with them. Then we went and we trick-or-treat it at for houses. It was no big deal. I am blown away


This week with the time change, Dominic has been all over the place – from absolutely refusing to work for his Occupational therapist, to spontaneous playing with a peer in a waiting room and firsts in the kitchen…  The time change weekend has also guaranteed that now we always have first dinner (when he walks in the door) and second dinner (closer to 630)… and sometimes third dinner.  Daddy and I are starting to have discussions about the pro’s and con’s of discouraging the third helpings.  We may go broke feeding this kid through puberty.  

 

So – 

 

I didn’t share these with you guys, but I shared them on facebook last Friday night because the event made me LAUGH so hard.  Dominic and I were watching Food Network and he watched and rewatched thse two (back to back) commercials at least 10 times.  His … commentary … is hysterical. 




 






Monday, as I was putting Dominic to bed, I found this scene in his room.  Mind you, I put away all the Halloween stuff over the weekend, so at some point he hid Skelly.   I am amused and so I’m going to leave Skelly there and see what happens over the year. 





Tuesday at our OT appointment, a little boy approached Dominic in the waiting room and asked to play.  Now this kiddo and Dominic work together in therapy for social skills, so it wasn’t like a stranger asked – but it was in a different environment, so we’re calling it generalization.  (I got permission from his mother to take this picture).  Then Dominic proceeded to absolutely refuse to work for the duration of his therapy session, which repeated itself at our therapy appointment Wednesday…




 

Thursday morning, Dominic made his own fried eggs, with just verbal cues and minimal hand over hand support from me. So this morning, I videoed him doing that.  It’s a long video, but he did almost everything himself, needed a smidge of support with one egg (duck eggs are HARD SHELLED).  Very proud of this. One of our biggest goals is around ADL’s (activities of daily living) and ensuring that Dominic will, at some point, be able to take care of all of his ADL’s on his own.




 

Thursday evening, he had speech therapy with Sarah, and he did something I’ve never seen him do, although she told me he did it once before for her.. here’s the text back and forth with Daddy describing it.  It was very cool.  She also told me he did the best he’s done for her with focus.  One of the biggest challenges we are having in getting him to read is that he glances at the page really fast and struggles to focus on it. The increase in focus gets us more reading and better answers.  One step at a time. 




 

A year ago – even 6 months ago -  I am positive I wouldn’t have had even an inkling we would be where we are now.  The combination we are using: Ioncleanse by AMD footbath for a foundation (which reminds me, he needs a footbath today), genetically targeted SNP support for his specific mutated pathways, mitochondrial support, a nootropic for his cogntion, and Prime My Body Hemp oil for cognition, speech, sleep, anxiety, inflammation, and autoimmune… is making a HUGE HUGE difference.  I have some other things that I want to play with, namely camel milk (will probably do that over Christmas break from school) and antiviral herbs, but I want to go very slowly because we’re in a good place and I don’t want to overturn the applecart.

 

Saturday, October 28, 2017

reading and visual attention, oh my!!!

Backstory:
I am a book worm. I have always loved reading and use fiction as escapism.  That makes this particular facet of Dominic's disability very difficult for me because he is illiterate at 12.  When I was 12, I was reading Gone with the Wind.

Dominic's visual attention span is very short. We've been working in occupational and speech therapy both for many years to increase it. Its very hard to deprogram a word when you glance at it only for a fraction of a second.  So we work on it all the time.  School has of course also focused on it (he's in 7th grade right now, so thats 9 years of school attempting to teach him to read, too)

What happened this morning:
Dominic was sitting in the living room with us, when he, out of the blue said "Reading".  Daddy and I  looked at each other, and then at him, and told him to go get a book and bring it up and read it to us.  He disappeared to his room for a significant while, and when he came back upstairs was holding a tiny little board book, one of the ones you use with a very little person.  I don't even remember where this one came from, its been so long since we got it.

He then sat in my lap and we went one word at a time through it. about 10% he knew on his own (the, and, of...), and the rest i had him repeat after me.  he focused on the whole book.  Well, i wanted a recording. So i sent him across the room to read it with Daddy.  He did better for me than Daddy, but here's that video. He focused, he stayed engaged for the entire time and he answered a bunch of questions at the end. He WANTS to read badly at this point.  We are SO CLOSE.



(purely for my own records, today was day 1 of our pulsing back in PEAPURE in combo with PMB.  Dr Bradstreet was seeing great things combining CBD and PEAPURE before he died, so we're going to give it a whirl for a bit as I have a box of peapure leftover I don't want to go bad)

Wednesday, October 18, 2017

IEP, check

Today was our annual IEP meeting with the school. This is where we touch base about how Dominic did on last years goals, and write new ones for this year.  

This is hands down the first IEP we have EVER sat in (and mind you its about the 9th one we've been in) where the first 25 minutes were spent with everyone raving about the progress Dominic has made.  Usually that part is about 3 minutes and consists of how much everyone likes Dominic.

A couple of the stories stood out for me, because they are really cool

- Dominic's teacher was being supervised for a next level license of some variety and her supervising teacher was in the room observing for awhile. Dominic got up, walked in front of this person and said "Strange.  Leave". 
He recognized that a stranger had no place in the SSN (significant special needs) classroom.  And he told her.

Apparently she didn't leave fast enough because he spent the next 25 minutes repeating "STRANGE, LEAVE" and finally got up and stood right near her and said "LEAVE".  She looked at the teacher and said "I'm sorry, I didn't realize...." and the teacher said "You should probably leave...."

- In speech therapy group session last week, Dominic knew the answer and another child didn't. So he answered for her. VERBALLY.

WHAT????

Apparently he does this All The Time in his regular classroom, to the point that his teacher actually has to tell him to be quiet. 

WHAT?????

- Routine, routine, routine.  Dominic's has been a hot mess all school year because they are experimenting with schedules.  The most recent routine change is that now he goes outside to recess before he brushes his teeth after lunch.  He apparently missed recess the first day because he was trying so hard to brush his teeth.  Oops.  Second day, he had it down pat.  His teacher writes out his schedule (no more PECS for us!!!) and he has to follow a written schedule. 

We decided to put him in choir, to see how he does.  So that will start tomorrow.  We also decided that we wanted the main goals for the classroom academics to be reading based and for his math, to make that money based.   Making the choice to move to more practical life skills...

We've also added a social work goal back in to work on creating intentional friendships with peers.  (this was at our request)

No later than the beginning of second semester, the school will be instituting a peer mentoring program with the 8th grade leadership club, those kids will be mentoring in some way (we will see how it pans out...) the SSN kids.  I've been asking for this for a number of months because I believe that Dominic wants friends.  And without the language, he struggles hard to make them.  He is also incredibly susceptible to the form of bullying that goes like this: "If you do X, I'll be your friend" and we are not going to allow that to happen.

Overall, one of the best IEP meetings we've had.   The school based speech therapist, who has worked with him off and on for many years and knows we are using PMB hemp with Dominic, is ECSTATIC (as in she was nearly in tears at his progress) and told me that she's blown away.

And here's a completely unrelated picture.  Dominic really likes to "make mommy's tea" in the mornings.

Friday, October 6, 2017

Hello spontaneous task initiation!

The way I look at Dominic is that its my job to create a functional, independent human being.  Most days I honestly wonder if I'll be able to do that - between safety issues, communication issues and a seemingly never ending repetition of the basics, most days I try not to think about his future. I stay firmly in now.

Backstory #1:  These ducks... while Its Dominic's job to let them out and put them to bed... I haven't been able to get him to give them feed/brewers yeast (ducks have a high niacin requirement, go figure), so I do that.

Backstory #2: I do very few processed foods in this house and Dominic eats gluten free oatmeal every morning, usually with honey and raisins.  He's pretty rigid about this and after getting the cutest little oatmeals in cups from the Autism Hope Alliance at conferences, i decided to order something similar from amazon in an effort to expand his palate.  You pour boiling water over them and let them sit for a bit.  I do this every morning, along with 3 fried eggs, for his breakfast

I am moving slower than usual today because I'm not feeling good and by the time I got outside, Dominic said to me "Mommy, Ducks, Breakfast" and pointed.  He'd gotten them food and given them their brewers yeast on top.  It wasn't quite enough so I had him add some more.
No. Big. Deal.

(?!?!?!?!?!?!?!)

Then we come inside and for the first time, Dominic picks out his preferred flavor of oatmeal.  I set it on the counter, next to the kettle thats almost hot, and go to the bathroom.   I come out and Dominic's already added water to his oatmeal.

(again... ?!?!?!?!)

We've got some serious initiative and independent activity happening in the ADL (activities for daily living) world...  And I attribute that to the combination of the IonCleanse by AMD footbath, and PrimeMyBody hemp, plus genetically appropriate supplementation. 

(of course, we're balancing that with the never ending sassiness that comes from 12.  Puberty may kill me)