"I'm not sure if I told you this last read through (it has been a while) but thank you."
You have mentioned some of this. I am happy to hear from you again.
"My 3 year old, up until 8 months ago was non verbal."
Yay words!
"Even now he has days where he can't make words come out (even though his vocabulary on a verbal day is above his age group)."
Okay, if you have not already done this, check for twice-exceptional. Some people have a very high aptitude in some area(s) and very low in some other(s). One way this can happen is if there's just so much brain that things get lost in it. There are skills for handling variable speech ability, but the good stuff is all from folks who are semiverbal and have hacked out their own solutions. They say the medical offerings for this are all crap, and I am inclined to believe them.
Not useful yet, but very worth your time when your son learns his letters: there is an app for a smartphone that allows you to program an instruction screen and then it opens a chatbox, for people who sometimes can't speak aloud but can still type. Other solutions include speechboard icons, pocket instruction cards you can hand to people who are being rude about your son's needs, and a pocket list of things commonly needed to be said. He could learn to use a point-list before he can read what it says, if you put the phrases with icons he can touch. Some of my friends have a point-list with things like "I can't talk right now. Please wait patiently while I try to reboot my brain" and "You can help by finding me a quiet place where I can destress."
"He has Sensory processing disorder and is likely on the 'higher functioning' end of the autistic spectrum."
Sensory processing can happen if the brain drops the ball, but also if the senses are simply way above human-standard. In the latter case, well, it's just what happens if you get one superpower without the required secondary powers. The brain overloads on all the data pouring in. That's a different problem than if the data is getting scrambled or lost, and needs different solutions.
"If ever his paed stops changing her mind (she spends at most 15 minutes with him in a crowded examination room twice a year. He either completely shuts down or sensory seeks. I have doctor frustrations. Don't mind me)"
Ask around if there are any people experienced with neurovariant patients. I have observed America's health care system to be utter shit, but some people have managed to get good use out of it. Alternating between sensory avoidance and sensory seeking is often the equivalent of "Have you tried turning it off and then back on again?" For some people it works, others not.
"How Phil and the team work with Hulk throughout all this- has helped me with my son."
Yay! I am so happy to hear that.
"We still have not so great days where everything is too much- where he needs quiet and calm and pressure to feel safe and not like everything is too much but the things you have bought up with Hulk helped."
People with glitchy or overpowered brains/bodies often need more time to figure out how to handle things. It is like learning how to use a computer, with no manual included, and you didn't get factory parts or programs for some functions but instead got the crappy shareware version, not to mention the things where you got nothing so now you have to teach yourself to code before you can build a patch for those. 0_o Rule #1 of disabilities and divergences: everything takes longer. (Except for things where you may have a coprocessor that boosts the speed, like my incredibly overbuilt linguistic coprocessor.) It is good that you are helping provide the quiet space needed for processing.
We are working on letters at the moment. He knows them by sight and shape- and has started working through the sounds. I have been showing him how letter sounds work together a little- but I'm not pushing him. If he is t ready then it isn't worth stressing him out over it.
Our life saver is his iPad- and the 'stickers'. The smilie faces, the variety of food stickers- they have all helped him tell me what he needs when words aren't working. We have also need using colours as a guide in a traffic light system- if he can't speak it, he grabs my hand and taps red for stop- it can be anything red- but it lets me know he has hit his limits. Yellow is 'it's building up' and I get a green go (usually verbally) if he is a-ok and happy to head out into the mess of the world.
I'm actually working through red tape to get my Rockstar in to see another paediatrician- as well as a behavioural therapist as well as the OT and speechie we get limited appointments with.
And your superpowers analogy works so well. I had to learn the hard way to deal with too sensitive ears and eyes- I can hear the buzz of electricals on standby- especially tv's and computers. It ends up giving me migraine symptoms eventually- but I think that's more I hit my limit. It honestly physically hurts to be around loud noises- including things like vacume cleaners (ear cancelling headphones are the best). I'm honestly glad there is more information from people who, like me, have learned the hard way to balance their wonky sensory stuff. I'm so glad that the Internet has made talking with people so much easier- because as you mentioned- some of the best advice and ideas have come from the people who have lived it and not medical professionals.
"We are working on letters at the moment. He knows them by sight and shape- and has started working through the sounds. I have been showing him how letter sounds work together a little- but I'm not pushing him. If he is t ready then it isn't worth stressing him out over it."
Wow, that is really early to be learning! :D I learned to read so early, I can't remember not knowing how, and have only a few memories of finding a book that was over my head.
There are tons of sensory toys for reading/spelling now. I have been putting them into various parts of my writing. Man, I would have loved these things when I was little. Actually, I still love tactile toys, one of my favorite game categories is stacking-block games like Jenga and Bausack Towers.
Montessori has a whole slew of resources like sandpaper letters, tracing letters in sand, lacing cards, stamping, etc. If your son is sensory-seeking at times then there will be favorites he reaches for, and he's doing it because it turns his brain on somehow. (Or off, but we're looking for the on ones here.) Basically just look for something your kid likes and think of a way to make letters with it. Since he is also dealing with sensory challenges, this will kill two birds with one stone AND is fun. Capitalize on the assets of his nature. Tactile learning is a thing and it works for people who are sensory-seekers. Use it and teach him how to use it by looking for ways to connect new information with familiar paths. http://livingmontessorinow.com/how-to-teach-phonics-with-montessori-letter-work/ http://livingmontessorinow.com/telling-time-activities-with-wooden-sticks-and-dots-free-printables-montessori-monday/ http://www.infomontessori.com/language/written-language-sandpaper-letters.htm http://mymerrymessylife.com/2013/09/diy-montessori-sand-writing-and-drawing-tray-preschool-learning-activity.html http://carrotsareorange.com/montessori-language-short-vowel-lesson/ http://www.mylittleme.com/letter-a-lacing-cards/ http://www.justmontessori.com/montessori-language-program/ http://livingmontessorinow.com/the-loving-parents-of-children-with-special-needs-everyday-superheroes/
Legos (or Duplo) are awesome for letters and words. I used these resources for a poem, and wound up designing the whole set because Terramagne has better toys than here; if you want to see that one, get me an email address and I can send you a backchannel copy. http://thisreadingmama.com/spelling-with-lego-letters/ http://thisreadingmama.com/lego-word-family-sorting/ http://thisreadingmama.com/lego-bricks-teach-literacy/
"Our life saver is his iPad- and the 'stickers'. The smilie faces, the variety of food stickers- they have all helped him tell me what he needs when words aren't working."
Yep, if he can do that already, he's got the visual mindset for using speechboard icons. You can teach those a few at a time and then make a pointcard of whichever ones you need most often. The only drawback is there's almost nothing available for free, and the commercial ones are $$$$. Basically you put them together in batches. They don't just help nonverbal people communicate, they also prompt language learners to use words by reminding them of words they might want now. http://aac-rerc.psu.edu/_userfiles/Bilingual_board.jpg https://s-media-cache-ak0.pinimg.com/736x/17/17/3d/17173da74ba9550a60591cd2b71223ec.jpg
"We have also need using colours as a guide in a traffic light system- if he can't speak it, he grabs my hand and taps red for stop- it can be anything red- but it lets me know he has hit his limits. Yellow is 'it's building up' and I get a green go (usually verbally) if he is a-ok and happy to head out into the mess of the world."
That is brilliant. Stoplight safewords make life so much easier. So do any urgent-code phrases. "Need food now" means we have ~5 minutes to get food. "Knight in Shining Armor Pest Control Service" means I drop whatever I'm doing to deal with the pest control emergency. It's a way to distinguish ordinary conversation from something that needs attention immediately. Saves so much headache.
Having simple words that mean complex things but grab attention is the best. Life got so much easier for both us us- him because he could tell me when he needed a break- and me because it let me not stay on high alert all the time trying to catch him when he became overwhelmed (I live with PTSD so I know how bad staying high alert is. I've been teaching Rockstar what I call baby basics of the mindfulness techniques- at the moment if I can get him to breath and tell me a color it's a good start. Depending on him I talk him through recognising what is overwhelming/what is upsetting him and go from there. Baby basics but I'm hoping as he gets older he will pick it up and use the techniques as part of his own inner dialogue. (That sounds bad when I put it like that but everything you say to children makes an impact and becomes their voice. I'd prefer the impact I have on my sons be positive and constructive).
Three is very young for him to have picked up his letters and numbers. I don't push him- we started off with a board that had animals one side and letters the other- I actually got it because it was set up for the animal/letter pegs to spin- and he loves anything that spins. It kind of built up from there. Just to blow you away- he has been counting- and adding and taking away using objects- since he was 2.5. We figured that one out accidentally at a cafe when he sat there and counted then took away and added more with sugar packets. Clever little cookie. Thank you so much for the links- I'm going to have fun reading over and coming up with ways we can use them XD
"Having simple words that mean complex things but grab attention is the best. Life got so much easier for both us us- him because he could tell me when he needed a break- and me because it let me not stay on high alert all the time trying to catch him when he became overwhelmed"
That is wonderful.
"(I live with PTSD so I know how bad staying high alert is."
Yeah, hypervigilance is an express road to burnout.
"I've been teaching Rockstar what I call baby basics of the mindfulness techniques- at the moment if I can get him to breath and tell me a color it's a good start. Depending on him I talk him through recognising what is overwhelming/what is upsetting him and go from there."
That is a great idea. My favorite mindfulness technique is in a game called We Didn't Playtest This at All, where with certain rules in play you have to do something before taking your turn. It's harder than it looks, but unlike the doorway excercise is fun instead of irritating. You might keep that in mind when your son is old enough for card games with instructions on them.
"Baby basics but I'm hoping as he gets older he will pick it up and use the techniques as part of his own inner dialogue. (That sounds bad when I put it like that but everything you say to children makes an impact and becomes their voice. I'd prefer the impact I have on my sons be positive and constructive)."
No, that sounds fantastic. I wish all parents would speak with the understanding that what they say goes into their child's self-talk. You can't guarantee it will turn out well, but you can certainly decide to put in good ingredients. It's kind of like setting comfort food, they pick what they pick, but you can make sure there are healthy choices in there.
"Three is very young for him to have picked up his letters and numbers. I don't push him- we started off with a board that had animals one side and letters the other- I actually got it because it was set up for the animal/letter pegs to spin- and he loves anything that spins. It kind of built up from there."
That's so exciting! Have you seen the gear toys? Some of them are good for studying science. There are magnetic ones to stick on the fridge, and some that are building sets.
"Just to blow you away- he has been counting- and adding and taking away using objects- since he was 2.5. We figured that one out accidentally at a cafe when he sat there and counted then took away and added more with sugar packets. Clever little cookie."
Zowie! That is impressive. It's going to be a lot of work making other people support both the high and the low spots for him. Usually they want to go all one way or all the other, and that is very destructive.
My partner has this binary puzzle where you have to spin the parts and slide the rod back and forth to get it out. I can't work it, but a math whiz who likes spinny things would probably enjoy it. http://www.cs.brandeis.edu/~storer/JimPuzzles/ZPAGES/zzzSpinout.html
"Thank you so much for the links- I'm going to have fun reading over and coming up with ways we can use them XD "
I'm glad I could help. It makes me happy to see a kid growing up in a supportive family like this.
"I'm actually working through red tape to get my Rockstar in to see another paediatrician- as well as a behavioural therapist as well as the OT and speechie we get limited appointments with."
Good luck with that. It really sucks when the people who are supposed to help can't or won't, or would but you can't access them. >_have superpowers in this world. We just don't tend to call them that.
"I had to learn the hard way to deal with too sensitive ears and eyes- I can hear the buzz of electricals on standby- especially tv's and computers. It ends up giving me migraine symptoms eventually- but I think that's more I hit my limit. It honestly physically hurts to be around loud noises- including things like vacume cleaners (ear cancelling headphones are the best)."
:D I am the same way. I have been told those electrical sounds are ultrasonic and ordinary humans cannot hear them. Me, I can tell if the computer is on clear across the house. I can't stand vacuum cleaners. A bank of TVs in a store will instantly give me a headache if I get too close. Super-senses have awesome applications but they leave vulnerabilities, especially in a very busy environment. But they are incredible assets if you learn how to use them. I'm everyone's go-to person for "Is this food starting to go bad?"
"I'm honestly glad there is more information from people who, like me, have learned the hard way to balance their wonky sensory stuff. I'm so glad that the Internet has made talking with people so much easier- because as you mentioned- some of the best advice and ideas have come from the people who have lived it and not medical professionals."
Agreed. I have gotten far, far more usable solutions out of fellow experiencers than I have from professionals who don't have that trait. Honestly, this is like why women often prefer a female OB-BYN or midwife: the ladypro has both the official skills and female parts of her own.
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