Exhausted from parenting/ASD children/Welcome to Schmolland!

[brat]

Reading through these posts I do see Foster son and a few of the other Foster kids that have come to stay at our home for brief visits.

A friend of mine also has adopted SN kids with one ASD. We both grew-up medical kinda main-streamed because of health issues as kids.Some schools put us main-stream others put us in mixed SNs classrooms.We attended some of the same schools. (I grew to like ASD kids because "they" accepted being the kid allowed to wear a hat at school when the "normal" kids either avoided me or took my hat.)She jokes that we grew-up as "4th culture kids"(we were labled "3rd culture kids", being dependants of parents living outside of parents home country) because we mixed with kids came from independant cultures of their parents helping them survive.We talk about what a gift we were given by shairing our classrooms with ASD kids.

I am still friends with one of the ASD classmates from high school.He lives on the east coast and I live in AZ but we still talk on the phone and computer many times a week.He has been a great guide to helping my Foster son.

 

[toodycat]

Hi, all. I have a question: Does anyone else get as irritated as I do when well-meaning folks tell you all about movies, TV shows,books etc about autism? This has happened twice in the last 24 hours. My DS has been diagnosed for about 15 years now. He's made fantastic progress and I have grown weary of chatting about autism documentaries, books or guests on talk shows. I particularly don't like anything portraying autism with bittersweet poignancy. I've cried enough already, thanks. DS is adorable and a classic example of "If you've met one autistic child, you've met one autistic child." Is there something I can say to these people or do I just have to listen politely? It's especially grating when they say that the kid depicted in whatever is "much more severe." If we are comparing apples to carrots why are we bothering at all? Thanks for letting me vent.

 

[blondietink]

I'm with you on that one. I hate to watch movies about either of my sons' disabilities. I will read something, but only if I want to, not because somebody sent me the article in the mail, or encouraged me to buy the book. My DS with Autism is unique and I wouldn't change it for the world. After 19 years of living with him, I am also tired of what I call the "flavor of the month" cure or therapy for Autism that changes all the time.

 

[brat]

The disease of the week movies sometimes open doors for my kids but I also get unnerved when folks shove fictionalized stories in my face.I got it about an Autism movie today as well.. thinking it might have been the same one...........

I try to just be as polite as I can be and thank them.(thinking to myself just how much my kids deal with and praying that these "movies" help others understand my kids better) Now if another parent of a SN kid whose kid has some of the same issues points me to something that helped them it does not bug me.I think it is the same nerve that has acted up since I was a kid, my friends where allowed call me names related to my disablity as terms of endearment but others it it felt different.

 

[Kat77]

I don't really mind autism chit chat but maybe that's because I'm blunt. I'll cut someone short by saying I hated that movie or X is an idiot if I need to . I don't mind hearing about something they watched or read but they better be ready for my thoughts if I have any to offer. If I had better manners I would probably be annoyed .

 

[Kat77]

The things you hold onto:
Once upon a time I was paired with another woman to teach VBS. My son was in the class and I explained she would need to make an effort to include him because even though he will not volunteer for activities, he could do them. She ignored him all week long! Finally on the last day of VBS she HAD to do an activity with him in a group. Later she came to me and said something about 'how much he understood' like she was amazed... I looked her right in the eyes, stated "Yeah, he's not retarded" and walked away. She was sufficiently shocked. To this day I can see she is embarrassed when dealing with me and I'm sooo glad. I know I should let it go, really I do...

 

[lovethattink]

The things you hold onto:
Once upon a time I was paired with another woman to teach VBS. My son was in the class and I explained she would need to make an effort to include him because even though he will not volunteer for activities, he could do them. She ignored him all week long! Finally on the last day of VBS she HAD to do an activity with him in a group. Later she came to me and said something about 'how much he understood' like she was amazed... I looked her right in the eyes, stated "Yeah, he's not retarded" and walked away. She was sufficiently shocked. To this day I can see she is embarrassed when dealing with me and I'm sooo glad. I know I should let it go, really I do...

Oh, that's a toughy for sure. It's one thing when someone does something to us directly, it's a totally different ballgame when they do it through our children! Makes it harder to forgive.

But in forgiveness, we are not saying what they did was ok. In fact, in forgiveness we can acknowledge what they did was plain wrong! But forgiveness sets us free from the power they hold over us. Makes our live less stressful!

The general public does not understand ASD. Ignorance abounds. It's up to us to be the voice for our children. Even if we have to literally spell it out for people.

 

[bookwormde]

If some one brings the subject up I am happy to educate them (probably well beyond what they anticipated). Many of the "entertainment" information still has missconceptions and narrowness in them so it is good to clear it up.

For a lot of our kids societal discrimiation and lack of knowlege creates their greatest disability impacts so anything I can do to lessen that I figure is progress.

bookwormde

 

[toodycat]

Good morning, Schmolland! Happy April! I have two totally unrelated questions for you all today.

1. I am making our ADRs for our next trip to WDW and I thought I would book the 50s Prime Time Cafe because DS loves goofy humor and DH is definitely the bad boy the waitresses will pick on---probably much to DS's amusement. However, when I checked the reviews, one said that it could be loud. DS is getting better with loud---how else to explain his love for Metallica---but I'm just asking anyone who has eaten there: how loud is loud?

2. My second question is about memory. We were talking to DS yesterday about his early childhood up to age 5 which was fairly eventful: he had surgery three times, went to Colorado once, Barbados twice, Disneyworld once, spent two years at the same full day special preschool with the same teacher who still asks about him, was in a recital in which he signed "I Believe I Can Fly," moved to new town at age 5 and says he remembers none of it, except that someone had one of those singing Bass toys in the pre-op room before his surgery at age 5. This strikes me as so odd because now he can remember what color twist tie I used on the English muffins. Does anyone else's kid have a similar lack of memory? What do you think caused it?

 

[bookwormde]

Not uncommon at all, even for may NT kids. DO you have any pictures from those times, sometimes they can "open the file cabinet" much better than words

 

[toodycat]

Lots of pictures! I will show his some and see if it makes anything click. He says all he remembers is that "this house was a lot better than the last one" which is true. He can remember a conversation in which we heard sirens and he said it was a police car and DH said it was an ambulance and Jake was correct. He also remembers a fire alarm going off in a movie theater for obvious reasons. Both DH and I can remember back to our very early childhoods. I was just wondering if DS couldn't because he was so "within himself" at the time.

 

[lovethattink]

Good morning, Schmolland! Happy April! I have two totally unrelated questions for you all today.

1. I am making our ADRs for our next trip to WDW and I thought I would book the 50s Prime Time Cafe because DS loves goofy humor and DH is definitely the bad boy the waitresses will pick on---probably much to DS's amusement. However, when I checked the reviews, one said that it could be loud. DS is getting better with loud---how else to explain his love for Metallica---but I'm just asking anyone who has eaten there: how loud is loud?

50's is loud. The tvs there have "snow" like they did when we were kids. The cm's are loud and funny. If your son doesn't want picked on, you will need to talk to your server on the sly and ask for the humor to be delivered to you and your dh and not your child. The most crowded, loudest part of the experience is waiting for a table. There is a waiting room with a lounge/bar and that gets crowded and loud, as does the little lobby and the entrance to get into the restaurant. I would suggest having an ADR for lunch at opening. This way it won't be as crowded in the waiting area.

2. My second question is about memory. We were talking to DS yesterday about his early childhood up to age 5 which was fairly eventful: he had surgery three times, went to Colorado once, Barbados twice, Disneyworld once, spent two years at the same full day special preschool with the same teacher who still asks about him, was in a recital in which he signed "I Believe I Can Fly," moved to new town at age 5 and says he remembers none of it, except that someone had one of those singing Bass toys in the pre-op room before his surgery at age 5. This strikes me as so odd because now he can remember what color twist tie I used on the English muffins. Does anyone else's kid have a similar lack of memory? What do you think caused it?

My son has similar memory issues. That is why it's taking him almost 7 years to learn the alphabet. For him, it's a name thing. He just can't remember names, letters, numbers. But he can remember fine detail about something. The neurologist explained to us that memory uses different parts of the brain. He can read, but half the time forgets the names of the letters. The neurologist explained that his memory is like a white board. It something else brushes against it, it starts to wipe it off. He recommended repetition, consistency, and reinforcement.

To remember peoples names, I take pictures and quiz him on who is who. Even people he has known for years, he will forget their names. We use rhymes or singsong to remember things. Yet on the same token, he can tell you who every single Star Wars character is, what they do, where they are from, etc. The neuro again said, it's using different parts of the brain.

We've also seen the memory issue surface with writing. He will forget how to write a letter or a shape.

Events too, unless we have pictures to prove he was somewhere, he will argue to no end that he never was here or there. Or if he wants to go back to a place, he won't remember the name, but will remember some minute detail about the place and it takes us a long time of questions and answers for us to figure out where he means.

He wants to go to the place with wood for his birthday. They have water with steam, and a big roof. To eat he gets chicken and to drink he gets that cold drink. That is all dh and I had to go on. Our lack of being able to figure it out lead to a huge meltdown. We felt so bad, and he was so frustrated that we didn't know where he meant. When we finally figured it out, it was Whispering Canyon!

 

[lost*in*cyberspace]

Does anyone else's kid have a similar lack of memory? What do you think caused it?

I would not be concerned. Many people with no disabilities don't remember their early childhood. I have a sibling, to whom nothing traumatic ever happened, and insists that she remembers nothing before the age of 10.

 

[Piper]

My NT sister doesn't remember our mother at all until the age of 7--That's when I married and mother actually started taking care of her (although Mother must have at least fed her lunch when I was in school) All her memories are of me.

 

[toodycat]

Thanks everyone. I feel better. DS and I just looked at pictures and he seemed kind of like he didn't want to look back on things. The photos did jog a few memories.

As for the 50's Prime Time, once I told him that there was a good chance of his dad getting in trouble, he was totally in.

 

[Clochette nordique]

About memories: I'm a Sexologist and Psychotherapist specialized in traumas, so that stuff about memories is daily work. One of the thing we realize very often and apparently some theories agree, is that memories are linked and bonded by biochemicals. The stronger or more significant the emotion (easy thing in Schmolland territory!), the stronger and more significant the memory OR, the loss of memory (dissociation or denial). (We work a LOT, with the Adaptive Information Processing Model that is the basis for EMDR. I use EMDR lots with DD11 and it helps her process her anxiety.)

DD11 remembers things that are linked to her second year of life IF, it's significant for her and linked to an emotional state (mostly anxious or soothing). She remembers colours and peoples and locations that we have to work very hard to get back. But she cannot remember something she learned in school today, unless, it's attached to something significant. You should see what she remembers about Disney that I told her 4 years ago. And we never went yet, but she wants to go very much!

Same thing with DH (High Functioning Aspie). He even says he cannot remember what happened yesterday, but would give you the precise details of what so and so said 8 years ago and that it was not logical according to him, so he had to work too hard to make sense out of it and therefore, refuses to see this person again!

Hope this helps too. Hope my English says what I mean.

Poussière de fée!

 

[Kat77]

TC- I have very few, if any, real memories from before the age of five. Kindergarten is where most my memories begin. My childhood was normal and my memory is otherwise great. I find it weird that DH and my boys can remember things from toddlerhood/preschool years.

 

[brat]

My Brothers who have much better book learning memory than I do but I have a better memory of other things from our childhoods than they do. I have to backtract to where we were living to know the year where they can know the year, the places and other names.I know things in pictures and feelings more.I did not realize till high school how much more I remembered if you asked me to draw it instead of write-it.I had a teacher who could not deal with my spelling and had me draw picture of everything I saw through the microscope instead of writting the names.

 

[minkydog]

He wants to go to the place with wood for his birthday. They have water with steam, and a big roof. To eat he gets chicken and to drink he gets that cold drink. That is all dh and I had to go on. Our lack of being able to figure it out lead to a huge meltdown. We felt so bad, and he was so frustrated that we didn't know where he meant. When we finally figured it out, it was Whispering Canyon!

I work in a school and just this morning I had a similar conversation with one of our 11yo Aspie kids. She had thrown up and I called her mom. The girl asked me if I knew what her mom looked like. I know her mom, but I asked the girl to describe her. This is what she said:

"She has brown hair, some eyes, a nose and a mouth. She wears a dress or some pants and a shirt. And she has a purse. Do you know her?" Why, yes.Yes, I believe I know that woman.

 

[kaffinito]

DS18 is like that. He'll ask me about something and will start off with "you know, that place?" It takes a lot of time to be able to figure out exactly what (or sometimes who) he's asking about. Sometimes it really is about "that place" and other times its a thing or an event. It takes a long time to get there though!

DS10 is wired a little bit differently. He can't recognize or process patterns, so for him everything is a stream of consciousness guessing game. I try colors, sounds, or smells and they all come out jumbled. With him you just have to wait for it.

He starts off with the name of some basketball player that I don't know and then it will segue into an event that happened when he was with his dad, and will finally end up with what kind of cake they had at his friends birthday party.