I’m still as busy as only a parent can be. I’m working full time, working on my Master’s degree in counseling/psych examiner license and of course trying to keep a handle on the ever busy Brink. Exciting things lately is even more language! He requests many more things now! He still is not calling me “mommy” but I will take any language that is not complete dialog from movies I can get. I also pray “bit my shiny metal ass” does not return, thank you Futurama!
It is now time for me to prepare his new iPad for school. I cannot wait to see how much more access he will have using technology (the one true way to reach him)! I am also excited to finish the fundraiser for his classmate’s iPad! Getting one funded is impossible and raising money for one is not either. Tugging on the heartstrings are so many good causes, some life/death that it is hard to explain why these are so necessary. We are getting close to having the funding we need for him but hopefully I can get some help from the people of tumblr. What application for visual scheduling (to include timers, voice recording & rewards) would you suggest? There are so many out there!! Any help would be amazing.
I will post a new pic from Brink’s recent birthday real soon. Somehow it is just too trying to slip a card into the computer. SMH So sad!
Best wishes to all of you! <3
So much has been going on with Brink. He got ESY so we are busy with that. I began my Master’s courses. Brink is back to fits of escaping, heightened security level at our home. I have missed Tumblr and one great friend reminded me people here do care! <3 I will not stay away so long next time.
Quick update list on what has happened since last on:
Brink said two sentences (not taught to him) spontaneously!
He has begun changing his own pull-up, one step closer to potty training!
He learned to tie his own shoe but will only do so for his para.
Typing skills are improving, can do a google search for almost anything (not always good).
His final grades were just short of honor roll (doing only slightly adapted work) and he made the honor roll one quarter!
He learned how to unlock the car and likes to pretend to drive (scary!!!).
Following instructions is improving (when he wants to of course).
There are so many things to still work on and we still have no real language but I like to try to focus on what we have gained today! :)
As some of you know, there was a difficult path for my family recently. I had to gather tons of information and evidence as to why Brink needed ESY (extended school year services) regardless of if the school presently provided such a thing. After much time, research and meetings, I can report that yes he will be receiving ESY this summer!!! It was a lot of work but so worth it! I have purchased him an iPad to help with integrating his school work to technology. Taking something he dislikes and putting it into a format he loves should help (I hope). I am now fundraising for a child that has a family who is unable to provide an iPad to their non verbal son with autism (he is a year older than Brink but had far less language). Hopefully that goes well.
I hope to be around more now that this situation is in hand!! Thank you all for your support!
How has everyone been?
Step 1: Go someplace public with your laptop.
Step 2: Click HERE
Step 3: Press f11
Step 4: Start typing frantically.
Step 5: Make sure other people see your screen.
Step 6: ???????
Step 7: Profit
THIS IS BY FAR THE BEST THING I HAVE SEEN SINCE FOREVER
“Borrowed” from Parenting-Autism
It was interesting to read her answers, how about you?
- I am a male.
- I am a female.
- I am shorter than 5’4.
- I have some scars.
- I tan easily.
- I wish my hair was a different color.
- I have friends who have never seen my natural hair color.
- I have a tattoo.
- I want a(nother) tattoo.
- I am self-conscious about my body.
- I’ve been told I’m attractive by a complete stranger.
- I have more than 2 piercings.
- I have a piercing in a place other than my ears.
- I have freckles.
- I’ve sworn at my parents.
- I have a sibling less than one year old.
- I want to have kids someday.Done
- I’m in school.
- I’ve lost a child.
- I have a job.
- I’ve fallen asleep at work/school.
- I always do/did my homework.
- I’ve missed a week or more of school.
- I failed more than 1 class last year.
- I’ve stolen something from my job.
- I’ve slipped out a “lol” in a spoken conversation.
- Disney movies almost make me cry.
- I’ve peed from laughing.
- I’ve snorted while laughing.
- I’ve cried from laughing so hard.
- I’ve glued my hand to something.
- I’ve had my pants rip in public.
- I was born with a disease/impairment.
- I’ve broken a bone.
- I’ve gotten stitches/staples.
- I’ve had my tonsils removed.
- I’ve sat in a doctor’s office/emergency room with a friend.
- I’ve had my wisdom teeth removed. (Some)
- I’ve had measles.
- I’ve driven over 200 miles in one day.
- I’ve been on a plane.
- I’ve gotten lost in my city.
- I’ve seen a shooting star.
- I’ve wished on a shooting star.
- I’ve seen a meteor shower.
- I’ve gone out in public in my pajamas.
- I’ve pushed all the buttons on an elevator.
- I’ve kicked a guy where it hurts.
- I’ve been to a casino.
- I’ve been skydiving.
- I’ve gone skinny dipping.
- I’ve played spin the bottle.
- I’ve drunk a whole gallon of milk in one hour.
- I’ve crashed a car.
- I’ve been skiing.
- I’ve been in a play.
- I’ve met someone in person from Facebook, tumblr and/or twitter, Gaia, other social networking site.
- I’ve played chicken.
- I’ve played a prank on someone.
- I’ve ridden in a taxi.
- I’ve seen Rocky Horror Picture Show.
- I’ve eaten sushi.
- I’ve been snowboarding.
- I’ve been dumped more than the dumper. (Pretty equal)
- I miss someone right now.
- I have a fear of abandonment.
- I’ve gotten divorced.
- I’ve had feelings for someone who didn’t have them back.
- I’ve told someone I loved them when I didn’t.
- I’ve told someone I didn’t love them when I did.
- I’ve kept something from a past relationship.
- I’ve had a crush on a teacher.
- I’ve been kissed in the rain.
- I’ve hugged a stranger.
- I have kissed a stranger.
- I’ve done something I promised someone else I wouldn’t.
- I’ve done something I promised myself I wouldn’t.
- I’ve snuck out of my house.
- I have lied to my parents about where I am.
- I am keeping a secret from the world. (Isn’t everyone?)
- I’ve cheated while playing a game.
- I’ve cheated on a test.
- I’ve run a red light.
- I’ve been suspended from school.
- I’ve witnessed a crime.
- I’ve been in a fist fight.
- I’ve been arrested.
- I’ve passed out from drinking.
- I have passed out drunk at least once in the past 6 months.
- I’ve smoked.
- I’ve smoked weed. (CLOSE TO 20 YEARS AGO)
- I’ve taken painkillers when I didn’t need them.
- I’ve eaten mushrooms.
- I’ve popped E.
- I’ve inhaled Nitrous.
- I’ve done hard drugs.
- I have cough drops when I’m not sick.
- I can take 3 pills at a time no problem.
- I have been diagnosed with depression.
- I have been diagnosed with one or more anxiety disorders.
- I’ve taken an anti-depressant.
- I have been anorexic or bulimic
- I’ve slept an entire day without needing to go pee.
- I’ve hurt myself on purpose.
- I’ve woken up crying.
- I’m afraid of dying.
- I hate funerals.
- I’ve seen someone die.
- Someone close to me has committed suicide.
- I’ve written a eulogy for myself.
- I own over 5 rap CDs.
- I own an IPod or an MP3 player.
- I own something from Hot Topic.
- I own something from Pac Sun.
- I collect comic books.
There have been phrases to television shows, songs or entire scenes that play out in our heads. Sometimes we sing them aloud, sometimes we simply share the story of the scene and other times something will become a catch phrase. For Brink it is “echolalia” as he does it constantly, muttering quietly usually. Sometimes he sounds exactly like the show, so much so that I think it might be on somewhere. Often they phrases are things he found on YouTube and not appropriate (yes we have had several IT people try to block it, he gets through).
This Friday he ran into Scary Movie. Yay! Someone had it in the “recently watched” section of Netflix. This is particularly bad because the phrase he has chosen is “Ah man I’m f-k’n stoned”. He sounds just like the character, another yay! My beautiful little red head is running around cursing and sounds like a crazed stoner. :(
We have purposefully watched many movies to bump the movie off recently watched. Yes, we called Netflix and that is the only way to remove it. Crazy right? it is time to fix that!
Echolalia is pretty much Brink’s main language. He can read very well and will do simple request. He tries to get away with something like “juice” as a request but I remind him to say it in a sentence to get “I want juice please”. This is huge progress for us. It is also why the other day, (Brink has fairly inexpensive over the ear headphones I bought him because he kept taking my pricey skullcandy over the ear headphones) when he requested “Mommy’s headphones please” in a full sentence without having to be reminded, I handed them over. Language is power and he will never realize that if I don’t respond. Ugh.
Any ideas on turning echolalia into useful language (without the stoner voice please)?
That was the request posted around tumblr to someone’s followers. I needed to be dealt with. I will explain…
I post an update about Brink. I touch on the fact that until he is an adult and/or expresses a desire to be labeled I still prefer the person first approach. Let me remind all, he is 7 and other than echolalia non verbal. I was sent into the stratosphere with young people declaring my brazen opinion must be dealt with (believe me it was not that kind). I would say I am shocked as it seems logical to me not to call someone by anything other than their name but this happened the last time. The hate stream has not changed my opinion.
I have been a mother for 23 years. I would not have let someone do this to any one of my children. They are all brilliant individuals with distinct personalities and attitudes that I spent my time building up to be what they want. This is how I shall proceed with Brink as well. Many things have to be adapted. I work hard every day to provide for my son to the best of my ability. I will not be harassed or bullied into adopting the opinions of others. Gripe about me, curse about me, spread it about that I am a terrible person.
Truth is, you don’t know me any more than I know you but I do know how to be polite to others. I do know how to show people respect which is honestly more than I can say for the people trumping about the internet trying to drum up attention based on my horrible behavior…wanting Brink to be called Brink.
I would SMH if it were not so ridiculous and sad. I also head back to school soon and will be unable to continue to argue something I think is this preposterous. Oh! I could make my Master’s thesis about this! In that case I will be back with questions regarding rhetoric, opinions and other things “allistic” people are wrong about.
(To one in particular, it is a shame we were unable to get to know each other better, I am also Ed Sheeran fan!) Also, yes there are some personalities I’ve witnessed on here I would like to isolate my little guy from (he is 7 after all) but not the “community” at large.
The person first language thing is still going strong after all this time. There are a shocking number of people that want to be defined by a title of some sort. I still simply cannot agree but if they are happy with it, I am happy for them. In our home, until Brink tells me different, he is Brink. He is a content little active boy. Thankfully he has not attached himself to the “lifestyle” of a diagnosis and I pray considering the attitudes of the individuals I have met on this site, he never will. I pray he will be happy and simply be him, title be damned!
In other news, I am still fundraising for Autism Speaks (who knew so many people disliked them?). We will be doing a walk for Brink this October. They help parents that are dealing with a newly diagnosed child which in turn helps the child. I do not care to discuss the politics of the organization. Helping the children & families is all I need.
I created a video for Brink I am still quite proud of, you can view it on here. We had to have multiple IEP meetings to finally get ESY going for this summer. I recently also purchased an iPad (thank goodness for monthly payments). I could not wait for some organization to deem him worthy of one. We fall in that awkward financial situation where you make too much money for assistance but still do not really have the money to buy such things. They call it “middle class”. We will be using the iPad for his school work, visual scheduling, building language and hopefully other self regulating tools.
I am still on the sign up list for many organizations to try to obtain an iPad for free but to give to another student in Brink’s class. He is a grade above Brink, has parents that are fairly apathetic to his educational abilities or progress. He is one of five boys that are all of varying degrees in SPED. Sadly, he would only be able to use the iPad at school because I am certain it would be broken or mysteriously disappear at home. He is less verbal than Brink (who would have thought that was possible) and has significant difficulties with behaviors and self stimulatory actions. I really think he needs it as much or more than Brink. Hopefully I can make it happen! It is really none of my business but you cannot help but love them all!
Finally, I am shouting out to my 10 followers and asking how are you all doing? How are your families? I feel I have missed so much working on the IEP and other things!
*Reminder to the person first haters, you get nasty, I do block and ignore so it isn’t affecting me but maybe you can look cool to your peeps.:)
Has anyone else ever experienced a child with autism that will use one hand to write and play some games but uses the other for other things? My older son pointed out that Brink uses his right hand to write and play Wii but uses his left for guitar hero and XBox 360. I had not noticed but he is right! Very interesting!
I finally put together a team for Brink’s Hijinks. We will be participating in the Walk Now for Autism put on by Autism Speaks October 13, 2012 in St. Louis. I am really excited. I know everyone is not a fan of the organization but the initial information packet alone is such a big help to parents of children newly diagnosed. I am excited for the day to be about Brink and children like him.
It was a bit disconcerting at first. There seemed to be little interest as there is all too often. People like to pretend the issue does not exist in spite of the numbers. They would rather focus on whatever popular foreign issue than children in their own back yard. Those with autism seem to often equate with the homeless population…do not look directly at them and you don’t have to acknowledge or engage in a solution. I am hoping to change this or go out trying!