Me, A Mom

3 kids and a dog

Archive for the tag “aspergers”

A 5 is against the Law

I just started reading this workbook

and have not yet worked with my son with it

While this workbook may not change your life

it could help change the life of a child you know

that is struggling to behave appropriately in the world around

I do not know enough yet to delve into the inner workings of how to use the scale of 1-5

it can be used to reflect on  behaviors

and

also used to refer to how ones inner feeling are(think anxiety, fear, agitation, etc)

even for someone not on the “spectrum” it is good to self evaluate and know and acknowledge  what/how you are feeling

there is a website

the autism program

that can help get you started

but I strongly recommend getting the book yourself.

the autism program also has a great resource page 

and the autism society of Wisconsin also has some great information, and if you are in Wisconsin you can visit a local chapter for support and information.

you can find more at Kari’s website 5 is against the law

so

back to reading

the best way to advocate

is to educate

Fears of daily living

Look,

it’s a fact

life is full of things that can

and

do happen

you know:

“Why do bad things happen to good people”

no…autism/aspergers is not bad but it is  a huge change

a change in how you think about actions and reactions

an everyday, uphill battle at times not just for the one diagnosed but for the whole family

I digress….

When bad things happen to good people

 you buck up

you learn to deal

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and you go on with the daily task at hand

…living…

but once that diagnosis comes through the door

on top of multiple other medical problems and issues for that child.

and you need to start researching

and then doing

and following through

and constant checking and rechecking

there is an unending indescribable level of anxiety

am I doing enough

am I teaching enough

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will my actions lead to my child being able to live on his own???

only time will tell.

until then…

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carry on.

Autism and life

So my sons diagnosis came late in life….for a kid.  He was 15.

Thought we’ve suspected for years he that he was on the spectrum.

So I did what you do, when someone you love gets a diagnosis

I read. and read, and read till I can’t read anymore.

Then I realize we’ve been doing it right.

My son is high functioning the degree of autism varies so greatly from aspergers/high functioning Doctorate earning Temple Grandin down to people who are non verbal and severely mentally/physically disabled

But some of the things I’ve noticed from all the books I read is that the children who have more success …have more structure

1.  set expectations then…follow through(they’ll get there but it’s going to take A Lot of repetition 

2.  practice, practice, practice

3.  Teach (as much as possible) skills of daily living…every day.

4.  from folding laundry(more simple) to balancing checkbooks(perhaps higher functioning autistics) as many skills that we can teach our children the more successful they’ll be in the future

5.  understand and notice their melt down points, do they need noise reduction headphones, do they need special glasses to filter out fluorescent lighting

6.  Give a safe place to melt down and then stick to it,  …You may tantrum on your bed…not in the living room….better yet get them there before the melt down happens

7.  Pay attention, learn their triggers, teach them how to avoid their triggers or deal with them…

Obviously the success of the above depends on the degree of disability of the autistic person.

Many days it’s baby steps…the same baby steps every day

find an outlet for yourself

if you don’t take care of you

you won’t be able to take care of them.

Light it up BLUE for autism awareness

Autism is becoming more and more common
more boys than girls….does that mean it’s a recessive thing??
when girls “get it” it seems to be more severe

is there something in our food source affecting people
our often overuse of medications
medications getting into the water supply from “toilet dumping”
something that happened in the womb???


science doesn’t know though they are examining many theories

we may never know the cause

but what is important is that those of us with loved ones with autism

that we keep reaching out to them, to make connections, on their level and that we try to have understanding that


even though they may not reciprocate in the way we would like

that they know they are important to us and that we love them

as a parent

we must do everything possible to get them ready to function in a world that is not often “autism friendly”

they must learn how to act/adapt/behave in a world that does not always make sense to them
autism is (for my son) a diagnosis, finally a reason for his behaviors, thoughts, actions….not an excuse….

so for that reason…..for awareness……

thank you to all who light it up blue!

from autism speaks :https://www.autismspeaks.org/liub

check out this blog from Dallas news

http://specialneedsblog.dallasnews.com/2015/04/light-it-up-blue-for-world-autism-awareness-day.html/

#LIUB

Meeting our Children where they are

Whether we have a 3 year old or a 15 year old

Whether they are developing normally or are having difficulties

we need to meet them….where they are

that is not an easy concept

so often we expect things of our children.

Whether it’s room cleaning, putting away dishes, or packing their own lunch

We assume they should be able, or should automatically know from seeing us.

We expect them to do things we have seen other children perhaps even siblings of our child doing

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and we think, say …”why can’t you do that….________ can”

I am still guilty of this

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and I look back

and see expectations I’ve set that were not appropriate

and now that we have a diagnosis of High Functioning Autism/Asperger’s for my 15 year old

I know why

he was not able to do some of what were asking

he was not defiant(most of the times)

he was not cantankerous (at least not all the time)

I have spent much of the last 13 years teaching and reteaching, simple tasks, simple social skills, simple thoughts

I have noticed my daughter is much more observant about household duties than either of the boys(who couldn’t care less which cupboard the bowls go in, or how laundry is folded)

but the boys know lots of facts about world news and products( something my daughter doesn’t care about)

So it’s hard teaching a 15 year old to once again…not touch the serving spoon to the plate you eat off of

or

wash hands before getting food out of a container

or

put wet swim clothes/towels in hamper…not under bed.. for the umpteenth time

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and that’s where my learning sets in

I am learning

to be patient

to reteach in different ways

watch Temple talk about Teachable moments

to be compassionate

to teach things thoughts, feelings, actions, in a way that the Autistic/Asperger’s mind understands.

I’ve been reading a lot by Temple Grandin

in her books she is insistent that manners be expected and taught of all kids on the spectrum

that consistency is important

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(yay I’ve done something right)

she also focuses  a lot on teaching to how the child learns.(which some teachers are better at than others, so if you have the option of watching how teachers teach and interact you should do that before placing your child in a classroom)

Temple has so many words of wisdom in her books.

Why are her books so great??

because She has Autism…..and yet she is able to put into words the thoughts behind some of the behaviors we see in autistic children.

her doing that putting into words what our children cannot yet do helps us understand, empathize with our children….and then work in as many different ways possible to reach them and help them grow to be successful adults

it

after seeing behaviors in my son that I have questioned to doctors and teachers for a good 10 years or so ….now that we have the diagnosis ….it’s all making sense….I and my son are not going crazy….he has a neurological condition that affects the connections in his brain that changes how he sees the world compared to what Aperger/autistic people  call nuerotypical people.

I don’t have a full handle on him and his behaviors, or his occasional outbursts.

but now I know why

and

now

I can do my best

(albeit far from perfect)

to Meet him where he is.

Wading through the books on Asperger’s and High Functioning Autism

There are hundred of books maybe even thousands  of books that are all about Asperger’s and High Functioning Autism.

Here is a list from good reads

another from autism resources

these lists are long but, I’m sure not full, as new books are published frequently

I’ve started with 3 just 3 books for right now

please don’t look at this so much as an endorsement…but more of a review on my thoughts on the books listed

I hope at some point in the future to create a chart rating the books on their features…but right now I have more reading to do

The following are the books I have started on.

Living Well on the Spectrum by Valerie L. Gaus. PHd

(think of this book almost an encyclopedia type guide to autism spectrum, it is filled with a lot of useful information…but also a lot you may never use depending on where you fall on the spectrum)

I personally think this book would be better if split into two books,

Book 1: the information

Book 2: more of an accompianing  workbook with  the quizzes, charts, and diagrams

one area of the book I found most helpful and plan to print and hang copies on my sons wall

is a gray box area called: A word about strangers and Aquaintances

this is an area that seems to be pretty common from what I’ve been reading on Autism and Aspergers

people on the spectrum are often too trusting

and

have difficulty defining relationships

also included in chapter 6 are several highly informative charts about how to discern if the person you are talking to or about is a friend or aquaintance, and how to talk to and converse with appropriately

Asperger’s Syndrome by

Tony Attwood

I

like that this book ends nearly every chapter with a concise, boxed in summary.

again not everything in this book applies to everyone on the spectrum, but much of this book applies to everyone(does that make sense?)

the book concludes with FAQ’s and resources, as well as information on diagnostic criteria, and a formal bibliography with other books you may find useful.

Asperger’s Rules by

Blythe Grossberg Psy. D

I decided to order this book, the other two I took notes on but this one is arranged in such a way that I want to be able to reference it more often…with my child.

It is comprised of many short “quizes” and by short I don’t think there is any quiz with more than about 5 questions

these quizes are meant to be

reflective of situations that have happened or

preparatory of situations that may happen

there are some great flow charts

sample/practice/what if dialogues

and is easy to navigate from one chapter to the next

or

to jump around as necessary

so here I am, digging in trying to learn as much as I can as quickly as I can, so we can move forward and prepare my child for the best future possible!

High Functioning Mild Autism/Aspergers

Yes that’s the very recent diagnosis of my 15 year old

something I’ve suspected for oh say 13 years!

because he followed the rules at school and got decent grades

but  was a beast at home fairly often, was not a concern of school personal

and by the way:

we’ve referred to him as Sheldon from big bang ever since the show came out!

but I’m getting off track…

in almost every book I’ve been skimming on autism,  that(different school/home behavior) is one of the most common things there is in autistics

they call it the Jekyll and Hyde symptom

you see they expend so much energy at school trying to appear normal, to perhaps not do their repetitious behavior or not speak out of turn by the time they get home they are mentally exhausted and cannot handle even the slightest stress, and they explode/tantrum/yell etc…

So what to do now??

for the last 12-13 years I have been his main source of therapy, talking about situations, and what set off the tantrum, and what he can do different next time but he is starting to need more than I can offer.

We are still waiting on the official report

so we can present it to the school, complete with suggestions for an IEP or 504 type plan.

which we’ll end up with … no idea…more later

I’ve just started wading through the books out there and one they all have one thing in common

way too much information.

OK  actually just enough information

but the way some of the books present it is overwhelming to wade through

that said I have started compiling information and making small decisions of “therapy” I can start to  add at home

like:

  • exercises in making eye contact
  • story sharing,  what would you do if…etc…
  • more dialogue practicing
  • more review of how day went(we already do quite a bit of this…now it will be in a different way)
  • and that’s enough of a start for now.

 

look for reviews of books I find most helpful to follow in the future.

Parenting without Panic…..yeah….right….well…maybeeee….

I just finished reading about halfway through the book

Parenting without Panic,(a pocket support group for parents of children and teens on the Autism Spectrum)

by Brenda Dater

We’ve often wondered if our oldest is somewhere on that spectrum

but that aside

as I read this book

I realized that there is great advice in here

not just for parents of Aspergers/Autism Spectrum kids

but for all parents.

If we can figure out what makes our kids tick(some days I feel like I’m close….other days I feel like I’m lost in a spiral of trying to” figure out”)

We can then adjust our responses and reactions to the behaviors in our children.

In some ways I found the book annoying….like….gee….how am I going to come up with those catchy phrases in the middle of dealing with a disagreeable child

but I think its about mental practice

thinking to yourself….”this is what I”ll do the next time this situation pops up”

Her “key tips for interpreting your child’s behavior is not just for “spectrum” kids/teens but really all of us(parents/caregivers)

she says:

-Consider the context

-Acknowledge developmental delays

-Acknowledge and recognize strengths

-Check your assumptions

-Apologize when you overreact

-Manage your own emotions

-Acknowledge effort

more about Brenda Dater the author

her facebook

If you are a parent consider reading this book! nah…don’t just consider it….do it….it’s an easy read…take from it what you need….you won’t be disappointed!

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