Author: autismplusmoreblog

I just love going to these classes with Judy Blake and the Family to Family Network. They have been very informative. I’ve said it all along – “Special Needs and Disabilities” is a huge umbrella and neurological disabilities are very different from physical and both of those are different from emotional. But the one thing that I am learning is “terminology” that we, categories that “all” those under the umbrella are placed in, etc. I think we as parents make the best decisions for our children that we can and we watch and learn from other parents and sometimes the cycle of acceptance won’t be broken that way.

A short blurb review of the class (this by no way covers all the wonderful stuff) just some highlights.

As amazing as the speaker (Kathie Snow) was and her vision and the amazing stuff she’s done with her son, it was both informative and conflictive as our children have different disabilities and therefore approaches to life success will have to be different. Kathie Snow really stretched my brain and I am grateful. http://www.disabilityisnatural.com
A few things that were very impactive to me from Kathie Snow during the last class. A very powerful statement from Ms. Snow was the difference between independence and interdependence. These were mindset changes for me: I always say I want to try and help Tyler be as “independent” as possible since he will more than likely live under my roof his entire adult life. Well the truth of the matter (a light bulb moment) is that none of us are truly independent, none of us. We are all “interdependence” in some form. So in my mind am I setting Tyler up for failure with trying to get him “independent” when I myself am not “independent” This explanation came in a form of a “simple explanation” We the participants were going to rely on the organizer of the event to provide lunch, and that organizer was going to rely on the pizza location and delivery person to bring the lunch and the pizza location in order to make the pizza relied on businesses to supply the ingredients and those suppliers relied on the farmers to obtain the ingredients, etc, etc etc – very few people in today’s society are totally independent. It’s all in the terminology and how we adapt to that terminology. I want Tyler as independent in his personal care as possible (I don’t want to have to bathe, hand feed, change his clothes, etc) I want to continue on the path for him to be “contributing” to the “interdependence” that we will have sharing household chores and duties. But using the terminology “independent” is not a reachable goal since I can’t achieve that myself. Using a different terminology and accepting different goals related to that terminology, eliminates a stress overload to me (on a mission to succeed) and sets him up for success and not failure.

I did realize from her lecture – that I as a parent (though not 100%) have fallen victim to the society expectation of “special needs” and “disabilities”. It is true what she says that the disability community is the largest minority communication in the nation.  I do buck the system a lot because I don’t believe that the medical, therapeutic and educational communities know my son better than me, but I like to work with them not take everything they say for absolute.

You know your child, you know their limitations and their strengths – I do agree if the child has the ability to make life decisions they should be making them, even if they are the wrong ones, like us all, many times we have to learn from our mistakes. I dispute some of the views on complete inclusion because in my son’s situation he thrives better in smaller less stimulating environments, BUT this isn’t the case for all individuals with a disability – so, with that, never allow the school or society to place limits on your child as a result of their disability if you truly feel that they can exceed in various areas.
Great reminders about how we talk about our children in front of our children is very impactive on how they think about themselves. Tyler is recently becoming very responsive to things I say to other people, so he’s actually gotten to a point where he’s listening, hearing and absorbing, long gone are the days of me talking “about” him in his presence. This should be a skill that I addressed years ago – reminding myself, though he appears to be in his own world he is a part of this world. He may not have been paying attention or absorbing in the past (but he’s getting better at doing this now) so now it’s a habit that I have to break from, so I agree with Ms. Snow, we as parents should alter those habits that we’ve created (unintentionally) so that we don’t have to undo those in the future.

I also like her vision on “Presume Competence” – this applies to your own child and any person you meet with a disability – it is a mindset that we have parents and community seldom have. I LIKED that statement.
She mentioned having Big Dreams and Goals. The dreams and goals of that should be (if they can) that of our children and we should not crush them. I am a realist which could be goal crushing. Now I like having Big Dreams for Tyler – and those dreams may not come in a society scheduled time, but it doesn’t mean I love site of the goals or dreams just because it’s on a different time schedule. Tyler has achieved things I was told would never happen. But Tyler, right now, doesn’t have his own dreams and goals but as his brain development improves, he may find a dream or a goal and I want to be able to support that (reasonable) or find an alternative to that goal, but I don’t want to just crush that possible goal.

Segregation from the beginning – depending on your child’s disability – again you will know what is best for your child, but we begin to segregate our children, with disabilities, at a young age and we adapt them to segregation. For some like Tyler he does much better in a segregated environment but for others segregation (even at a young age) may not be what is beneficial for them. We shouldn’t just assume that the label presumes that segregation is better. Sometimes basic milestones that aren’t being achieve for children are focused on too much instead of finding accommodations immediately to help them succeed. (Powerful statement: provide too much help to a person (and they become helpless) We tend to have lower expectations for the disabled and they sorta falls under the not presuming a person with a disability is competent. I like that she mentioned Inclusion is the natural state – we are all born “included”. That was an interesting statement. We need to help our child, find their strengths, abilities and if we can their hopes and dreams. Our children are more than their medical diagnosis. I loved the “impactive” statement that we will all have some sort of disability throughout our life or as we age. We might be born with differences (neurological or physical) or something may happen along with the way from accident/injuries and from the normal aging process.

NOW again and I keep repeating this – it will differ depending on your child. When you research information like this or attend seminars and classes – take what you need from it and leave the rest.

As much as I love Tyler’s teachers, I had a conversation with the new teacher the other day that sorta rubbed me the wrong way and knocked my “hope” for Tyler right out from under me. I haven’t responded to the teacher because I am trying to process what she said and how I feel and my realistic type of thinking – and I’ve read the book (listed below) and I am writing my response out so that she and I can discuss this at his upcoming ARD.
I could write about all the things she spoke of, but in reality it’s my perception of what she discussed, I highly encourage everyone to visit her site and possibly purchase her reading material and form your own personal opinions and ideas. Feel free to visit her website  https://www.disabilityisnatural.com/ (she has a lot of great and downloadable information)– I got the small version of her book, I bought Apple-Bites – Common Sense Disability Strategies for Everyone – She is a powerful and at times an emotional speaker. She doesn’t claim to have all the answers but loves to share ideas for people to find their own paths and not be stopped by society adapted limitations.

The first of the class had to do with Bullying. I really loved that the speaker was not a fan of 0 tolerance policies, indicated that schools need to do away with “bullying” group therapies that the bullies attend and that she should incorporate a type of all around daily “kindness” type of training (yes you can’t force people to be kind – some people are just demon seed) but exposing some people to something that they may not have in the home environment will help. This needs to be done at all levels of school – about 10-20 minutes a day to discuss sensitivities. The Special Needs community is such a large target for bullying because many of them lack the social skills to understand what is happening to them, but no one should be bullied.   We need to be reaching out to our schools and asking them to change their policy.  (Schools normally choose to follow their policy that they’ve accepted)

It was a very informative class and I am looking forward to the next one in November!

Today was really informative. I have 3 more of a 4 class series on helping Tyler’s future and teaching him to become a self advocate. It is really amazing about the history and the present for those disabled, differently abled (however you want to state it) and what the future holds. I really learned a lot and learned I have a lot to do. As Tyler’s brain improves I hope to see him flourish in this area. I met some great people, had some amazing conversations and loved hearing from those who maneuver very well through county, state and federal systems but I really enjoyed hearing from some self advocates (young adults) which gave me hope for Tyler. The disabled community is just like the non disabled community, they are individuals, they should be treated and recognized for themselves just like all of us. My thought process on Tyler’s future, how I see Tyler and my personal goals (which I will very soon shift to his goals) really took a turn. I have been wiped out since leaving the event with my brain going 90 to nothing. (A little Stress Away and Orange was just the thing I needed) But all this in a good thing – with Tyler’s improvements I hope he and I will be able to work together for his future.

I was soooooo proud of Tyler he played on a Kindle til the battery died, participated in answering some questions, worked in a math workbook I brought, helped the presenter with the “clicker” and changing slides. I was VERY impressed with him introducing himself with his entire name and I saw SOOOOO MUCH improvement. I was unable to help him with the math workbook BUT he was reading instructions and doing the work!!!!!! Yes, Yes, Yes! Comprehension at work!!!!! Thank you Jesus!

#progressnotperfection #theygrowintoadults #thenwhat #canheadvocateforhimself #amIholdinghimback #brainhealth #yleo #puritymatters #oilyspectrum

Well I am glad I bought 2 backpacks this year, the Mesh and the Clear Plastic – this week is proving the need for the clear plastic LOL – I let Tyler make a choice each morning which he would like, on rainy mornings he has chosen the clear plastic 🙂 WHAT an amazing improvement. Tyler is so fixated on pattern setting with no change (it was NOT an easy task to even change backpacks this year as nothing was wrong with the one he’s had the past couple of years). I allowed him to pick out his color for his mesh back pack (red) and then I found him a red and black lunch box and then got a clear back pack with red trim – all similar in colors. Monday I had him look outside and then I showed him the clear back pack again and I let him decide what he wanted to take – he chose the clear back pack so his breakfast (in a paper sack) wouldn’t get wet. He keeps choosing the clear back pack these rainy mornings. LOL – He can use which ever backpack he wants, now that sees how using both can work – letting him making those choices and decisions. (Let’s protect the breakfast LOL) He knows his lunch is in a lunchbox and won’t get wet, but the paper sack will. Very proud of him. It’s the little things where you see some of the biggest progress in brain health.
#yleo #puritymatters #oilyspectrum #cognitiveimprovement #progressnotperfection #autismdifferentnotless #processinggoodchoices #ningxiared #mindwise #mineralessence #multigreens #itsthelittlethings

http://www.myyl.com/cathycrate1

I like to be honest with my AU families and I love sharing how much Tyler has progressed with the use of Young Living products – but I also want to share that even with all the progress the “meltdowns” from autism/spd overload still happen now and then. For this story it has been a LONG LONG LONG time since he’s gone into severe meltdown mode – the meltdowns that take us both down to the floor (it’s safer that way) but it did happen on Sunday. (thank goodness it was not a “helldown”).

I have noticed that since Hurricane Harvey last year Tyler gets really outta sorts during Thunderstorms or bad rains. (We were not harmed in Harvey or displaced but there was so much media coverage and I know he could sense the anxiety that happens during these storms) When we are a home he is surrounded by all his “comforting” things including his diffuser, his weighted blanket and his electronics and Thomas things but we were actually over at a friend’s house.

After a meltdown like this, I like to recoop and look at everything that led up to it – he was wanting to swim, he gets in the pool, rain is fine for swim but once the lighting started he needed to get out (that was rushed) then he was playing under the covered patio with his headphones on while the rain was beating down on the metal roof (very loud) then encouraged to come inside he was being resistant (had my phone which I didn’t want getting wet with the blowing rain) – get him to the door, he wouldn’t come inside and wouldn’t close the door (looking back at this point there was a lot of “rushed” things that didn’t allow for processing) finally he gets inside and is stimming with repetitive words and getting louder and louder and because I wasn’t participating in it and it was aggravating him and I am sitting down on the floor (in ignore mode – sometimes that works best) then he’s set off by me not standing and engaging – he’s trying to pull me up – constantly verbal stimming – he’s so big that now he can literally drag me and was, but not to a point of not being safe or getting hurt. He goes to walk away to the door again and J puts him in a bear hug to slow him down, Tyler turns from that and comes down to the floor where I am and begins to bear hug and wants to roll around – he begins to break down and cry – wanting pressure, squeezes – until I can get him to calm enough to do breathing and neck rolling. Then after that I ask if he wants oils, his answer is yes. I apply to his writs, elbows, back of neck and bottom of feet – then I give him about 30 minutes to himself to decompress, let the oils work and give him a time to watch on the clock for us to leave. I TRY not to leave immediately after a meltdown (depending on where we are at) because I know that the “inside” of him is still a ticking clock ready to go off even though he looks calm on the outside and it can take a couple of hours if not longer for a complete relief but normally if I can wait 30-40 minutes, that is satisfactory to at least function safely to leave. At the designated time, he was calmer and ready to go, kindly said good-bye to everyone and then on the way home he mentioned his room, his latern and his heavy blanket.

It’s been a while since this has happened, but I think his anxiety level related to the rain is a little much and I need to make sure oils are applied before hand if we are going to be out in the weather. Next, he handled all the “rushing” decisions and sometimes you have to do that due to circumstances, but it obviously was overwhelming for him.

Going with the flow of the meltdown, staying on the floor, ignoring the stims, getting to a point of breathing, then oil application and a window of time to initially decompress worked us through this meltdown. Looking back and knowing to make a different plan (really oil application before we leave in weather is going to be the first plan).

My heart and prayers go out to those families are affected by any natural disaster be it a massive affect (displaced from homes, loss of property or life) or those that were affected in not so massive ways but still made some sort of an impact on a young person’s mind.

#yleo #puritymatters #meltdown #calmingblend #breathing #headrolls #autismdifferentnotless #sensoryprogressingdisorder #progressnotperfection #autismreality

A summer full of FIRSTS – and many I never dreamed would happen!!!! All I am seeing is the cleaner I getting Tyler the more progress in many delayed areas he’s making.

1st it’s been 2 years since he was in ESY – simply because we had a bullying situation (with another special needs student) Tyler’s freshman year in high school proved to show that the bully had calmed down and Tyler was handling being in the same environment as the bully so we proceeded again with ESY for socialization and structure.
Next, Tyler attend 3 different local day camps – 1 he attends every year and the other 2 were completely new, with people he didn’t know but at a location he was familiar with.

These camps were small in numbers with great supervision and lots of activities. The other new one was a week long art camp and the other a camp with activities, crafts and a field trip. He participated daily, interacted with the other campers and followed directions from the camp staff (soooooo proud!). I also let him go on both field trips (one to a local water park and one bowling) without me and he did amazing! Also, on Fridays, (when not in camp) he gets the choice of the beach or bowling and this year, every time he chose the beach even being stung on 2 of those trips by a jellyfish.

Then for the first time, Tyler went on a “vacation” – we to a location that had no cell phone service or internet. It was a back to nature and technology disconnect. He did GREAT. We did have a dvd player but that was the only thing that worked on the station. Tyler rode in the vehicle for 6 hours (longest extended ride he’s ever done) enjoyed a campfire, told a campfire story, hiked a large rocky hill, learned to cast a rod and reel, ate camp pies and floated on a river. I had been prepping him prior to us leaving and as always he found “connections” with Thomas. Sir Topham Hat and Tyler were going on vacation, a story from a Thomas book, we stayed in cabin #7, which is the same as Toby (and he took Toby’s picture) he had a campfire like Peppa Pig’s family. He survived without his computer, his tablet and the internet 😊 I did let him take some trains and books. I also took separate hygiene products so he had his “camping” items and his “home” items stayed in place. He was very anxious that his tv, toys and computer were not coming but I assured him they would be there when we got back. He choose to sleep on the couch at the cabin so the DVD player could be on (little things like this I was willing to compromise on since he was away from home). I needed to find ways to allow him to participate in the outdoors and then have time to come in and decompress with somewhat of his routine (after that 5 hour vehicle ride he sat and watched the DVD player for about 2 hours before venturing out the cabin.

This was a year that Tyler wanted to watch fireworks on July 4 (I always let him choose and never force it) and then right before school he walked away with a cavity free dental visit! We continued with speech therapy on the weeks we didn’t have camps.
All in all, Tyler had the busiest summer ever! It was very different from his normal summers and he seemed to enjoy them, wasn’t resistant on attendance and could verbally tell me a little bit about each day.

As long as I kept the calendar up and we discussed things – he made it through and he only asked for his calming oils on the 1st day of the camps (that is only 3x that he asked) MASSIVE IMPROVEMENT.

I am so grateful for the Young Living and non young living regimen I have Tyler on. I firmly believe that the cleaner he the more progress he’s making. Since finding out about the gene mutation and having to change the B vitamin (YL’s B vitamin doesn’t carry the missing ingredient Tyler needs) Tyler is about to “absorb” more of the amazing nutrients in the other YL products. The naturopathic told me to keep the regimen I am using just add this to help his body absorb.

#yleo #ningxiared #mindwise #multigreens #calmingblends #sulfurzymecapsules #sulfurzymepowder #mineralessence #thievesoralcare #makeourownbodyandhaircare #thieveshouseholdcleaner #member2282859 #individualjourney #oilyspectrum #autismdifferentnotless #progressnotperfection #cleanerliving #babysteps

http://www.myyl.com/cathycrate1