Author: autismplusmoreblog

The Special Mother by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen? Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“This one gets a daughter. The Patron saint will be Cecelia”
“This one gets twins. The Patron saint will be Matthew”
“This one gets a son. The Patron saint…..give her Gerard. He’s used to profanity”
Finally He passes a name to an angel and smiles. “Give her a disabled child”.
The angel is curious. “Why this one God? She’s so happy”
“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel!”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you”
God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness”
The angel gasps – “Selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’. She will never consider any ‘step’ ordinary. When her child says “Momma” for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see…ignorance, cruelty and prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side”
“And what about her Patron saint?” asks the angel, his pen poised in mid air.
God smiles “A mirror will suffice”

Went to class 3 of 4 of the self advocacy training  yesterday.

We had 2 topics (these are for Texas) –

1 was guardianships and alternative guardianships – great information and lots of information can be found at http://www.disabilityrightstx.org

the 2nd topic was discussing legislation and for Texas we begin session in January (Texas has sessions every odd year) – this presentation was done by The Arc of Texas.   These organization has local chapters so go to their site and find the ones in your area.  This is a great resource to have with very informative information (above and beyond legislation) FYI they do provide advocate help when needed – but can be difficult at last so if you think you may need an advocate for some reason – contact the sooner than later.  https://www.thearcoftexas.org/

When you read how impactive it is for mainstream kids imagine what it is like for sensory kiddos who are by their IEP goals encouraged to go out into mainstream classrooms (most special education classrooms are toned down to provide an easier learning atmosphere). What I like about Tyler’s district is when your child goes out to mainstream classes the teachers really try to work together placing a child in the right mainstream class that is beneficial for that student and teachers take into consideration the way the classroom is set up (I know when Tyler was in elementary school it was always a precautionary measure to look how stimulating the classroom décor was before deciding where to encourage him to go) now Tyler goes to mainstream fpr only art. Tyler learns better in a non mainstream classroom (for several reasons).

https://www.edutopia.org/article/dos-and-donts-classroom-decorations?utm_source=facebook&utm_medium=socialflow

The teacher and I have been working hard on restructuring Tyler’s goals hoping to step into vocation training next year. (Even with all the progress, Tyler is still around a 9 year old developmental and social – but making cognitive progress each day – the cleaner I get him the more progress he makes)

She really listened to my reasoning on wanting “functional math” and trying to incorporate academics in a different way.

So – he’s in 2 prevocation classes right now – I asked why all the cutting and pasting worksheets coming home? I said is this to “follow instructions” she said yes but with a little more complicated than that – she said that they read a story on Monday and then a day or so later they do a work sheet – involving cutting and pasting in sequence of information – (instructions and memory work) – I said, great. He needs to still work on those fine motor skills as his writing has met “goals” but is still difficult to read so she explained how she’s approached these basic things into prevocation training. I like it, so I asked to keep those tasks in mix with the goals in the IEP. I just wanted to make sure that the time and effort spent on this type of stuff had a functional purpose.

I told her many of Tyler’s goals has not changed because he’s not been able to regurgitate information to know if he’s learned the information or not, even in various forms of prompting for the information, but now, especially since June when I restructured his regimen things really seem to be stepping up a little, so I want to try and push it a little.
She truly understood where I was coming from the time and money issues and that this has been an ongoing goal since 5th grade and I don’t want to give up on the goal because now that’s he’s at 9ish age MAYBE we can figure out a way to make it stick. We have come up with strageties to work on the “concept of time” Tyler knows how to tell time but if you say – in 10 minutes we are gonna leave, he doesn’t get that, but if you say at 3:10 we are leaving he does get that. I told her I’ve been working on this for years and it might just be one of those things he never gets but I want to keep working on it because that’s the type of wording they use in the work force, – hey you go on break in 15 minutes – not always, but I hope to help him understand what that means. I told her I know sometimes the AU brain it is pure repetition if that repetition is for years until you wake up one and it clicks! So these goals are being shifted from math goals to vocation goals.
We went back to the social study goals and she asked me if Tyler knows his personal information and I said for the most part yes – BUT if someone asks in a question not in the way he knows (i.e. – when is your birthday when were you born, what is your date of birth) he may not be able to respond – also, concern I have is in a moment of overload I don’t know that he could respond, but more importantly, job interviews and applications it is crucial to know how to provide information in various ways it is asked. So we are removing SS goals, such as “name 10 countries and the number 1 crop they produce) to more functionable skills in social and vocational communication. We worked on these ideas together – I told her, I know Tyler is smart, most kids special needs or not are smart in their own way, but knowing this type of information isn’t going to help him in vocation – and right now, college is not in our future (with progress, it’s not to say that college and a degreed career wont be in his future, but that path is not going to happen at 18 or 19 as it stands today and anyone can go back to school at any time in their life) but for now, I want to focus on, at least trying, to have him work part-time in a job as I continue to help him make progress in life. I told her I have him involved in 2 programs that can lead to adulthood, either in addition to a work program or as an alternative to work program, but I don’t want to plan today that that is my only solution, I gotta try all angles before I make up my mind on which approach or when need be the approach changes. He is definitely trainable but some keys in this is getting his biological age to work with his developmental age and getting his developmental age, at least for work, to be more like his biological age (the juggling act)

Other type of academic goals will remain somewhat the same as he needs certain academic credits to graduate and of course some will help in functionable life.
I assure her that smart, is smart and you can learn at any given time, but I am running low on time when it comes to assistance through the public schools and he’s there 6 hours out of the day right now, so I really need to take a completely different approach towards his future and pray I am doing the right thing.

Finally, she mentioned about removing his BIP his behavior hasn’t warranted a BIP in several years and I said, I really don’t want to do that. I was told years ago, that when you get rid of the BIP, IF IF IF you need it, it takes quite a bit of effort to get it reinstated and I don’t want that. I said, we can modify the BIP now because Tyler tends to be more emotionally responsive to things rather than aggressive responses right now. So she spoke with autism team and sent me a proposed modified BIP – very much directed towards his emotional response and how to react to those with the various calming techniques he’s learned. I said with the changes and challenges we are getting ready to put on him, he’s gonna need an intervention plan if things get outta sort.
She is going to try and start incorporating some of these in January – (he will be 16 by then) and this will allow him to start going off campus for an hour or so a day in learning to transition for vocational training. This will allow the staff and myself to work on strageties to help him adjust to, tolerate and manage his behavior, emotions, outside the classroom and in a potential work environment.

I told her that I know the IEP can be modified at any time and that we may need to do that. I told her that I know that Tyler is a different person at school than he is at home and that they see how he acts, responds, etc without the home environment and for vocational, that is the Tyler I need to focus on for that purpose. I will keep him involved in the 2 different programs afterschool (and the 3 day camps) over the summer for now. I told her that Tyler will continue his speech therapy at TCH (communication speech) as long as they will let him and that he will continue with his academic tutor as long as she is able to do work with him.

This is really emotional for me as I am having to put a lot of trust in others without me helicoptering over Tyler – and I am having a hard time shaking that LOL. This self-advocacy course (I take what fits with Tyler and leave the rest behind) that I’ve been going to once a month has really opened my eyes on things and sorta gave me some things to think about in different approaches to take. I have watched and learned from my AC family and others with their older children and I just take what I need from everything and leave the rest behind.

I would’ve never dreamed that Tyler would’ve come this far (he has really achieved many things I was told he would not. 10 years ago he was at a 20month level across the board). I do put a lot of credit into the natural regimen for him and I do work on his cognitive, brain and gut health, the therapies, the amazing teachers and paras and friends, research, trial and error and of course the support from various autism support groups and parents.

Monday will be another ARD completed with massive goal changes.

Tyler went to the Pumpkin Patch with his afterschool program (and I didn’t go) big step for me (working on letting him do things – in a controlled and supervised environment – without me)

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