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janneane7 - Jan, Andy and Adults with Autism

City: somewhere just east of Providence RI
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Country: USA
Member since: Oct 23, 2007
Last logged in: Dec 01, 2008

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Mother, Parent Information & Support Provider, Self-Stimulatory Behaviors, Echolalia, Anxiety

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janneane7's Page URL

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janneane7's Bio

Hi everyone

My name is Jan and I am Mom to my wonderful son, 22 year old Andrew who has regressive autism that is fairly classic in it's presentation, (the result of his MMR vaccine at 16 months.) He also has bipolar disorder and tourettes syndrome.

I also have a wonderful (NT) daughter Allie who is 25 and working on hers Masters Degree in Fine Arts.

I work for an Autism agency and spend the rest of my time advocating for my son. I am trying to get the people in power in the adult service world to understand what "Best Practices" are for people with Autism.

I have been married for 26 years to my DH who is a sweetie and very content to let me do the "autism stuff."

Andrew has just transitioned from school to adult services, a very disheartening event! Adult Services knowledge about people with Autism and their needs is generally where the school system's knowledge was back in 1993!!

I am really hoping to be able to corespond with other parents of young adults with Autism who are also strong advocates for their sons and daughters. This is a tough enough road to travel, without having to do it without being able to share ideas with others who are also facing the similar issues.

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Perseverations

by janneane7 on 12.01.08 - public

First for the record let me say that I am not enamored of the word perseveration. In fact I refuse to use that word.
Honsetly I usually use the word...

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First for the record let me say that I am not enamored of the word perseveration. In fact I refuse to use that word. 
Honsetly I usually use the word obsess or maybe say "get stuck" when talking about ways that Andy won't let go of things. What I really prefer is the word persevere which means to persist, keep trying, stick with it because it is so much more of a positive word. I should really try using it more often!
Andy perseveres when he doesn't know what he needs to know or doesn't understand. For exapmple for the last few weeks Andrew has been asking repeatedly (over 50 times a day) "Melissa go to the pizza box zoooooooooo" BUT because I cannot give him a clear answer that he understands (because I am not sure when or even IF this should happen) I have been giving him a variety of answers: Melissa is busy, the zoo is closed, I will call Melissa, we will see when you can go.... just some of the ineffective answers I keep giving him.
So, he just keeps saying he wants to go to the pizza box zoo. Which reminds me I have to talk to Melissa and then come up with a conrete answer that he can grasp.
He also perseveres on going out to eat at his adult program. Again, because he knows they go out every other Wednesday BUT doesn't know where they will go (they decide the day before or the day of) he worries and asked over and over, saying "Marc I want to go to McDonalds" or "Marc I want to go to the pizza box restaurant" (as opposed ot the pizza box store which is the grocery store). I can't get them to understand that he NEEDS this information, probably because this IS the way they do things, so he will contine to persevere. 
Anything else that he does repeatedly tends to be self stimulatory in nature and so to me isn't persevering, but sensory based.

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thanksgiving... why should it be better than any other day

by janneane7 on 11.28.08 - public

Well, I thought Thanksgiving would be good... And actually it wasn't all bad. Hubby helped out and I got all my cooking done in an orderly manner and ...

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Well, I thought Thanksgiving would be good... And actually it wasn't all bad. Hubby helped out and I got all my cooking done in an orderly manner and on time!!!!!
BUT something terrible happend and I feel so bad. 
My neice Meri arrived for dinner (she is 3 months younger than Andrew) and was in such a HAPPY MOOD hugging everyone and so excitied for our family dinner.
Andrew on the other hand was bored and frustrated because his normal routine was shot. He was sitting at the table in my kitchen, while I was cooking, making lots of loud noises when my Dad yelled up from downstairs for him to CUT IT OUT. (he HATES it when Andy starts making LOUD noises)
SO I gave Andy some ativan so he would be calm for dinner, then asked Meri if she would take him for a ride just to get him out of the house. I also asked her to stop at the little store down the street to grab some milk for the green bean casserole. She and Andy left all smiles.

Well, 10 minutes later she called me sobbing hystercally.

Andy INSISTED on going in the store with her and when he got in there he wanted a 1/2 gallon on orange juice. She didn't have enough money and she tried to explain it to him but he just flipped out. He hit her in the head 3 times and kicked her, then he hit the lady standing in line in front of them, sending her glasses flying right off her 
face. 
Meri was horrified and terrified and called me bawling her eyes out. I couldn't even understand what she was saying but luckily I could understand where she was. So, my dh Bob ran down to get Andrew.

Of course, Andrew was fine when he got home except for saying I'm sorry over and over and over. I was furious but couldn't let it show because I knew he would loose it completely and dinner was in 1/2 hour.

My neice ended up going home and not even having dinner with us. I felt like crap! I still feel like crap and feel so guilty.
Andy has a history of being difficult with Meri and I shouldn't have asked her to take him to the store.
I want to make it up to her but I just don't know how. I love her so much and she has been through so much crap in her life... I just feel terrible

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What to do when there is nothing to do?

by janneane7 on 11.23.08 - public

DO any of you have this problem?
Andrew doesn't watch TV, play video games, or have any interest in the computer. Oh how I wish he did!!!!!!!
He doe...

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DO any of you have this problem?
Andrew doesn't watch TV, play video games, or have any interest in the computer. Oh how I wish he did!!!!!!!
He doesn't like puzzles, doesn't play board or other types of games (he doesn't understand winning or strategy)
He doesn't read books... (when he was young he would look at Dr. Suess books or picture books of Trucks for hours!)
But now he has no interest in this... (I think it was part of his maturing process and finds this kind of babyish)

Andrew LOVES to be busy, to be moving... unfortunatley that means that I must be ON all of the time!

When he is home, I have to keep him busy and I have to find things for him to do, like hanging up his laundry, helping me fold sheets or putting clean dishes away.
The only things he does on his own without me being there are:
1. paint (which really does require me to being available to help so he doesn't go through all of the paint (expensive) or throw painted covered brushes in the sink or make a mess in my kitchen, (which is the only place we have for him to paint in our apartment.) Plus I have to help him clean up afterwards. 
2. do bubbles (yes the kiddie bubbles) which he does for maybe 30 to 45 minutes a day, outside by himself
3. have "private time" (if you know what I mean) in his room.
I am at my wits end!!!!! I have to find at least one other thing that he can do on his own where I can get a little break. If he isn't BUSY he isn't pacing back and forth in the living room or bouncing like a mad man on his therapy ball because he is so bored.
Oh, and even though he paints he detests anything arts and crafts... and I just don't know what to do...
any ideas out there??????

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Andy's paintings

by janneane7 on 11.22.08 - public

A few of you have asked me about Andy's paintings or wanted to see more. I just uploaded 4 more, including 2 new ones, Ocean and Clouds; and Freezing ...

All grown up... now where to go?

by janneane7 on 11.20.08 - public

This is the title of the story that is running this week in a number town's (SE Mass & RI) weekly newspapers.
I was interviewed and Andy has a couple...

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This is the title of the story that is running this week in a number town's (SE Mass & RI) weekly newspapers.
I was interviewed and Andy has a couple of photos in there. 
http://www.eastbayri.com/detail/80058.html

My new mission in life is to get the challenges of adults with Autism seen and understood. (the terrible loneliness, your skills not being recognized because of other areas of challenge, being under employed or not working at all, the lack of understanding of Autism in Adult services, the added stresses to the parents as you watch your friends, who now have 'empty nests', as they come and go as they please, and you can't even go to dinner without getting a sitter...) I'm sure you get my drift.
The reporter did a nice job so if you have a moment hope you will read the article.
For some of you, this will someday be your challange too... Hopefully for many of you things will change in major ways before your children become adults. BUT if the changes over the years in the school system are any indication of how fast things change (I've watched that for 20 years now) don't get your hopes up too high.

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Do you feel out of place part two

by janneane7 on 11.09.08 - public

First thank you to every who responded!!! I loved reading all your posts.
Because so many of you responded and so many had similar feelings I though...

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First thank you to every who responded!!! I loved reading all your posts. 
Because so many of you responded and so many had similar feelings I thought I'd share my experience the other evening.

I did go to the pot luck reunion of the mothers group. Initially I felt a little awkward. 
Of course as it usually does, the talk turned to our children almost immediately and people would ask about Allison (no surprise she is the oldest and many of them know her) So I spoke of how she was doing in her Master in Fine Arts program and how she is teaching a college class for the first this year. Of course those who asked would then say; “you must be so proud” and I would respond that yes we are extremely proud of her. I also discovered that some of their kids are doing amazing things and some have turned into total screw ups that the Moms in those cases are worried or concerned.
Some Mom’s asked me how Andrew was doing. This is always my awkward moment. How much do I say, and how honest should I be? I know if I am honest, I will be educating them on the realities of his life which is not at all a great way to live. BUT if I’m honest will they feel sorry for me or for Andrew? 
As I said before I don’t want pity, but I do want people to know and understands that there are a whole group of older teens and adults who are misunderstood, thought to be mentally retarded, thought to be child like, thought to be incapable of things, and who are lonely and alone because they have Autism. 
Honestly all this is running through my head… so I decide to be pretty honest and it mostly went like this: “So, How’s Andy doing? (with that slight note of poor thing in their voice) “Well” I say, “he’s doing ‘ok’… He’s in an adult program now, and I hate it, because they don’t understand Autism and he isn’t getting what he needs, so that is hard. But the hardest thing for Andy is he has no friends, so he is very bored and lonely all of the time.” I get a few nods of sympathy at this point, which don’t make me feel pitied, so I go on… “It’s hard when the only people who are in your life, the only people who will do things with you are paid to be there.” I mostly get a response of quiet but some nod again sympathetically. But I have to share the good too so I go on… “On the positive side…”  I tell those who ask, “Andy is painting and has had his work in 4 art shows.” It’s funny because initially some of the women look skeptical or perplexed. I tell them that Andy stated painting at age 19 and is getting is slowly getting his work out there. I tell them that we donated a print to the Providence PBS Art Auction and that he’ll have a painting in a book coming out this month and one painting in a book coming out in March. I explain that it is my hope that painting to help him get to know new people and offer him the opportunity to get out into the world and make REAL friends. 
So it went on like that through the evening, with the women I spoke with, sharing stories back and forth, laughing, and offering support that things would get better for Andy and for those whose typical kids weren’t in the best place in their lives. 
The best part though was on my way out the door. I met a woman who had just come in… YEARS AGO I had her daughter in the pre school play group that I ran for years, then later in Sunday school. She is so excited to tell me that he daughter has her first teaching assignment this year in Virginia. Her daughter is the lead teacher (and along with 6 classroom aides) has a class of 7 boys with severe Autism! We talked for about 15 minutes and I was so excited to know that this little girl that I had taught, (and who had been in some Sunday school classes with Andy) is now teaching kids with Autism. She tells me her daughter LOVES these kids, has truly found what she was meant to do. 
We swap e-mails so I can get in touch with her daughter to tell her how proud I am of her and to offer my support if she ever needs anything. 
So, my fears were mostly unfounded. These women, who I never see anymore, many who I haven’t seen in well more than 5 years, were nice. There was little in the way of pity, and even some interest in seeing Andy’s work. I gave out 3 of his business cards to people who wanted to check out his website so they could see his paintings. 
I know I’ll still run into to people who will pity Andy or me, but I also know that I have to be willing to put myself out there and just be honest. I cannot control how people respond; I can only control how I act. And if Andrew is with me, and someone talks to him like he is a 4 year old, in one of those annoying sing songy voices, I will politely remind them that my 6’ 2” 290 pound son is 23 and isn’t a little boy anymore.

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do you ever feel out of place?

by janneane7 on 11.07.08 - public

Sometimes, I just feel so uncomfortable being around people who don't have kids with Autism. I think this has gotten more pronounced as Andy and I hav...

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Sometimes, I just feel so uncomfortable being around people who don't have kids with Autism. I think this has gotten more pronounced as Andy and I have gotten older.
For example I have been invited tonight to a very small get together to celebrate the work of a woman who donated a lot of her time to a mother’s group way back when my kids were toddlers/preschoolers.
Anyway, in some ways I feel SO VERY uncomfortable being around these women. They will ask me about my kids, as I will about theirs. I will answer their questions about Allie and about Andy knowing full well that they do not understand at all about Andy and some will even have that condescending look of pity on their faces. If I tell them about Andy and his painting, and that he was actually in a show for "real artists" (and not just artists with Autism... because they wouldn't get that they are REAL artists too) I'll get smiles and nods of oh isn't that "sweet" or cute.
I hate feeling this way but I know I will. 
Maybe part of it is that these women aren't friends but after all these years, merely acquaintances. 
A funny thing is I don't have any problem with this at my husband’s men's softball league games (of which I go to everyone.)
The guys will occasionally ask about Andy and I know that they really don't get it... but they never seem to have that look of pity... or that awww isn't he sweet attitude about Andy like he was still 4 years old.
I am so torn about whether to go tonight. 
If I go I know I will want to tell them how Andy remembers all of their children's names from when he was 2 and 3 years old and frequently asks where they are... then he always tells me that "they went to the ocean".
(I have no idea what that means!)
I just wish that they could understand that yes Andy is still severely challenged but no he isn't stupid and yes he has gifts and talents and no I don't want you to look at me with puppy dog eyes... life is tough enough without you feeling bad for me!
I guess I will have to decide at some point before it gets too late... 
BUT I want to know from you, have you ever felt this way or avoided something because you know you will feel uncomfortable?

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would you complain?

by janneane7 on 10.16.08 - public

Right now I am so ticked off... Andy swims at the Y every week with his dad. Back in early September Andy and Bob went to the Y on their regular night...

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Right now I am so ticked off... Andy swims at the Y every week with his dad. Back in early September Andy and Bob went to the Y on their regular night, Monday for swim, and discovered that the schedule had been completely changed and there was no more open swim on Monday evenings. Andy was quite upset and thankfully a woman was there who is a regular who told the life guard that Andy has Autism and that he NEEDED to swim if only for a few minutes. Andy was still upset and stressed up at least he got about 15 minutes in the pool. I didn't get too upset because I figured I should have checked the new booklet that came out in the fall. (Which I didn't do because they haven't changed family swim in over 10 years.)

Tonight though is a completely different story.

Andy and Bob went to the pool, got changed took their pre pool showers and went in only to discover that there were over 75 LITTLE kids and their parents in the pool. When Bob asked the life guard what was going on he told him that the Y had invited the little ones from the day care center and their parents to come to the pool tonight so the parents could see what they had learned in swimming classes. Obviously Bob and Andy couldn't swim.

There was no sign out front say there was no family swim tonight, not kind of notice at all.

I have had a problem with my local Y for years now, because they don't do anything at all for people with disabilities. They have programs for seniors, for people with cancer, people with arthritis, for children, for Moms... there are programs for everyone but children and adults with disabilities.

I am considering writing to the Executive Director to tell her that there are people with Autism who are Y members and that tonight we were really lucky that Andy didn't blow a gasket and have a meltdown (which could have scared the hell out of the little kids) or that other older kids with Autism who I know go for swim weren't there.

What is funny is I was up there today to pay for Andy's membership (We had to drop our family membership because it is so outrageously expensive ($70.00 a month!) and I was going to run in to see if I could speak to the executive director to ask her to PLEASE PLEASE create a program, and program for teens and adults with developmental disabilities, but I was running late so I paid and left.
Now I wish I had...

SO if you were in my shoes would you write a letter and if so what would you say?

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Medicaid makes me MAD

by janneane7 on 09.09.08 - public

Andy, because he is over 18 has Medicaid in addition to my husbands health insurance. Well he is on a bunch of different medications to help treat his...

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Andy, because he is over 18 has Medicaid in addition to my husbands health insurance. Well he is on a bunch of different medications to help treat his bipolar disorder. These meds keep his mood stable and enable him to have a much more normal life (well as normal as you can get with Autism & Bipolar & Tourettes) 
Anyway, recently his risperdal went generic. I was fine with that until 3 weeks in and we discovered that Andy was suddenly off the wall at night. He was miserable, more obsessive, and just plain really cranky. So I called the doctor and although he said he hadn't had anyone have any problems with the generic we decided that putting Andy back on the name brand risperdal was a good idea, with the plan to talk in two weeks.
Well two weeks later Andy was much better and back to his old self. In the mean time though his depakote (used as a mood stabilizer and not for seizures) also went generic!!! The psych nurse who works for the doctor told me that they has contacted Medicaid and filled out the paper work to have both the risperdal and depakote stay brand name, and BECAUSE of the problems it was important NOT to change the depakote to the generic.
Well I go to the pharmacy today and the very sweet guy who works there told me that he had received paperwork from Medicaid that we had been denied ON BOTH!!!!!!
I was so ticked off!!!!!
I don’t mind generic medications. I’ll jump at the chance to lower my bill but when it affects my son’s mental health which the pshyc nurse documented, well it just burns me up to no end! 
I will now have to pay $30.00 for each medication per month instead of paying $3.00 with Andy’s Medicaid. 
I know some people try to rip off the system but it is awfully sad when someone who is just trying to make sure her son stay stable enough to be happy and actually have some semblance of a normal life gets slapped down like this.
I have already called both the Dr and the nurse to tell them that I want to appeal. 
We will see what happens!

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word play

by janneane7 on 09.03.08 - public

As much as Andy still struggles with language, both spoken and the understanding (verbal not so much the visual communication) he surprises me by the ...

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As much as Andy still struggles with language, both spoken and the understanding (verbal not so much the visual communication) he surprises me by the things he comes up with...
For example tonight a fat woodchuck who has been hanging out in our backyard all summer was sitting on the lawn munching grass. I was on the deck and Andy came to the door. I told him to quietly come outside. Then I pointed to the lawn and said: Andy what's that? (he had never seen a woodchuck before)
It took him a minute and then he saw it... he quickly walked to the edge of the deck and said "That's a squirrel" 
of course his voice scared the woodchuck away... so I told him no it's not a squirrel, so he guesses again and says a mouse (well that cracked me up... this woodchuck is FAT!) so again I tell him no... so he says it's a rabbit... 
I tell him Andy that's a woodchuck. He looks at me and smiles and says "woodchuck" then he says "like a hoodchuck."
Well that cracked me up and I told him "no, it's a woodchuck" emphasizing the W. he smiles again and says “it’s a stickchuck! 
I never would have thought of that… but boy he does this all of the time! He comes up with these cool kind of word plays which always make me smile and think boy he may struggle with language but he has a unique way of having fun with words!!

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Andy and the van home part II, or No idiots this time!

by janneane7 on 08.19.08 - public

Well Andy has done it again! He has taken my notions and what I KNOW about how to best support people with Autism and turned it on it’s head.

If yo...

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Well Andy has done it again! He has taken my notions and what I KNOW about how to best support people with Autism and turned it on it’s head.

If you read my composition “It’s not Autism it’s the Idiots” then you have the whole background story about the hell OF dealing with Andrew’s transportation home from Adult services every day.
Andy’s new transportation was starting yesterday, so I spent the weekend with thoughts about how we were going to present this to him. Then I had this thought: What if I hadn't said anything to Andy about the impending change to the new van back in July? Might he have taken it all in stride like he did with the constant changing from one van to another and different drivers with company that had been driving him every day since October? Yes, there was that wonderful, fat, smiling whale, floating on a rainbow sea, painted on the side of every van… And with Andy being so visually oriented it didn’t matter if it was a blue mini van, a giant white passenger van or a gray one whose size was in between, or that the drivers changed way too frequently. The fat smiling whale told him “They are here to take you home!”

So all weekend long I kept thinking, “maybe I shouldn't make a big deal out of this new van change.” 
I have often thought that sometimes parents scare their kids by giving them too much information or by not being matter of fact about the issue, letting them know it is no big deal. But on the other hand I have seen kids freak because parents were afraid to tell them the truth.

I decided that I would give Andy the truth, BUT it would be a truth that Andy could understand in his very concrete thinking mind. SO Sunday evening I told Andy, “you know that the blue van was all broken? Well it was really “smashed” (Andy likes this word) and the man couldn’t fix it. It isn’t coming back. But the van people went to the truck and van store and bought a brand new van for you to come home in. isn’t that great?” Andy tells me “yes.” Then I ask him what van is bringing you home? Andy says the blue van.

Ok, Lets go over this one more time.

And so I do… then I let it go. He has to know this isn’t a big deal.

Of course the blue van isn’t broken. And of course the “van people” didn’t go get a new van. But Andy cannot understand that his ride home had to go back out to bid again and that the company had to change yet again. He only knows the fat happy whale logo.

So Monday morning comes. I haven’t said anything since last night but I figure I have to go over this one more time. I sit with Andy as he finished his breakfast and break out the pad and pen. I remind Andy that the blue van is all smashed and that the van people went to pick out a new van for him to ride home. Then I quickly jump to making a list of what we will do when he gets home; favorite things like going to buy bubbles, stopping for an ice coffee and having his friend Dev stop by for a swim. He smiles, and is fine. I have knots in my stomach already.
I bring him in to his program and drop him off with a quick kiss and the words “I’ll see you when you get home!” 
I spend the day running errands with 3 separate calls to the new transportation company who I haven’t been able to speak to until today. I am hoping my 6 week run of picking him up every afternoon has come to an end.

I get home at 2:00 and grab a quick sandwich and put my feet up for a few minutes before Andy is supposed to get home at 2:45. Next thing I know I hear a horn in the driveway. It’s Andy, he has made it home on the van! No problems, he ran right out from his program and jumped in the van without a second thought. Now he’s home, all smiles and ready for that iced coffee!

Thinking back I know that I HAD TO prepare him for the change back in July because it was going to be a VERY DIFFERENT ride with 3 stops, people getting on and off before they brought him home, and because the ride was going from 15 minutes to over 45. There wasn’t much I could do but tell him. But I am glad that I figured this out too… that the information Andy needed to get was the information, the truth, that he could understand. And YEAH no more picking him up in the afternoon…. KNOCK ON WOOD!!

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It isn’t the Autism it’s the idiots!

by janneane7 on 08.15.08 - public

Yes once again it is time for me to say this.

I’m not saying that Autism isn’t challenging. After watching my son struggle because of autism for ov...

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Yes once again it is time for me to say this.

I’m not saying that Autism isn’t challenging. After watching my son struggle because of autism for over 20 years, and after going through some truly terrible times I know how difficult it can be; BUT too often, way too often it is the people that we have to deal with that make our lives and our kids lives hell.

It’s happened to us again.

At the end of June Andy’s adult program announced to me that Andy would be getting a new transportation company home every day. (I already drive him in every day because he can’t be on the van for an hour or more.) The change was happening because every 5 years ALL adults receiving transportation must have their rides go back out to bid.

When Andy was in school the “mini bus” would often change as would the drivers. That wasn’t a big deal because most mini busses look exactly the same and our town only had so many drivers. He rarely had a problem.

In adult services, even through the transportation company might remain the same, the vans can change daily. One day a blue mini van, the next day a BIG white 16 passenger van and the next day a regular van that is yellow. Andy got used to his first transportation company that started the day after he started adult services back in October. He got used to the changing vans and changing driver, but the most frequent van was the blue mini van with a logo of a whale and rainbow on the side. He liked that van and calls it “the blue school bus” It was also perfect because they (the state adult agency) had agreed in October to give Andy “sole transportation” meaning Andy would be on the van alone.

With the change that started July 1st Andy would ride on a BIG wheel chair van with new driver because it was a new company. I was also told he would not receive sole transportation anymore. 
I was livid and told them that all of this was going to be a problem. 
The new route meant that they would pick Andy up with one “medically fragile” adult in a wheelchair already on the van. They would then go to two other locations, and pick up another “medically fragile” adult at each. Next they would take all 3 adult to their group home. Then they would bring Andy home.

I talked to anyone who would listen and told them that this was a problem waiting to happen. I asked who would be responsible if Andy got distraught and hit one of the fragile adults. I got nowhere.

Day one of the new van: After lots of preparation with a social story with photos of the new van, Andy walked out of his program, took one look at the new van and the new people standing there waiting for him and ran back in the building. He flatly refused to go on the van so I had to pick him up.

Day two: I set it up so our Autism Consultant would be there to help prepare Andy at the end of the day. Andy’s staff person mentioned the new van to Andy about 45 minutes before it was time to go home. My Consultant said that when he mentioned the new van that Andy’s hands started to shake and his eyes filled with tears. As the staff person continued to try to prepare Andy he completely lost it, screaming NO VAN NO VAN! Then he went, put his back against the wall, picked up his foot and smashed two HUGE size 13 holes in the wall.

Gratefully the Autism Consultant was able to remind the staff that they were very lucky considering the severity of the panic attack (and she said that was clearly what it was) that Andy had the presence of mind to take it out on the wall and not the staff.
She told me too that she asked Andy “where does the blue school bus take you?” Andy tearfully said “home”. Then she asked him where does the new white van take you? She said he just looked at her confused and scared. For Andy the new van, and new route was too many people and too many stops with him not truly understanding if or when he would ever get home.

After a few days of me complaining and going over everyone’s heads I was told that the transportation company that he had previously would once again bid on his ride AND they would set it up that they would be the only one to bid, even though they aren’t supposed to do that.

6 weeks have gone by and I have been driving him both ways every single day. With the cost of gas and my old gas guzzler it has been costing me something like $30.00 a week to drive him. (In the adult world, unlike school you cannot be reimbursed for driving)

Today I got an e-mail from Andy’s service coordinator from the state telling me that transportation would start Monday. Not with the original company with the blue van with the whale and rainbow on the side that they promised me would come back No it is ANOTHER NEW COMPANY. I don’t have a phone number to contact them, I don’t know if it will be sole transportation. I know nothing. OF COURSE the coordinator will be out of the office until Tuesday.

I am so furious I could spit!

I told them, and they saw last time that it wasn’t the ride, it was the strangers and the HUGE change. It isn’t if we didn’t try very hard to prepare him!!

I will have to try again, but I am so angry that there is an asinine system that allows crap like this, (that stresses my son out and stress me out) to continue happening.

Like I said, it isn’t the Autism it’s the idiots!

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Exhausted

by janneane7 on 08.13.08 - public

Andy has been having a hard time of it lately. I’m not sure if it is because of his adult program (where he is bored out of his mind and doesn’t get a...

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Andy has been having a hard time of it lately. I’m not sure if it is because of his adult program (where he is bored out of his mind and doesn’t get anywhere near enough physical exercise), or if it’s because his mood stablizers are too low and so he is cycling (bipolar) again or if it is because his risperdal got changed from the regular stuff to the generic. 
In any event he has been unusually loud, making loud explosive grunts and noises.

For those most part I think these are tics, which are induced from stress. (I should state here than Andy has Autism, Bipolar and Strep Induced Tourettes)
Normally I could, for the most part anyway, just turn off the sounds, go about my business and not listen, although I will admit there are time they noises can get to be like fingernails on a blackboard.

Andy isn’t happy but when he is making these noises, BUT he generally isn’t angry or upset either. As I said I think they are mostly stressed induced and are a way to let the stress out.

The problem… we live upstairs from my parents. My Dad who is 82 has little tolerance for Andy’s noises and when his loud noises (and make no mistake they are LOUD)  go on for more than 5 or so minutes my Dad starts yelling in a very loud growling tone of voice “CUT IT OUT!”

So, I, in an attempt to quiet Andy down start to pretty much nag him. “Andy quiet down”, “Andy stop it”, “will you please stop!” which of course gets Andy upset and he starts to push his teeth into the back of his hand (which usually starts to bleed) and gets even more agitated.

If I don’t quiet him down, my Dad could come upstairs and start yelling at Andy to cut it out. Then he will tell me how Andy listens to him, that I could make him stop if I wanted to. HA! Like I want to listen to him do this? Maybe that is what I should say to my Dad next time.

Still it wears me out. I am tired of Andy not being happy, I am tired of the noise, I am tired of the constant stress of trying to keep him quiet. He is 22 now and I am just getting tired.

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I want my life back!

by janneane7 on 07.07.08 - public

You know how sometimes you wait for life to calm down so you can get things done, or visit firends or even post here? Well that is where I have been f...

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how he thinks....

by janneane7 on 06.04.08 - public

Andy has been “off” for the last few days… You know what I mean…. “off’ as in he gets irritable quicker, he is more stimmy, just a few shades off from...

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Andy has been “off” for the last few days… You know what I mean…. “off’ as in he gets irritable quicker, he is more stimmy, just a few shades off from his typical self. I am not really sure why this is… could be mild allergies, could be the warm weather has really finally hit, (that always throws him off for at least a few days) or it could be that his adult program is boring and frustrating him into not so nice of a mood…
Whatever it is I have been watching and trying my best to be patient with him, in his moodiness.
BUT yesterday morning Andy was up extra early, which was not a good thing because I hadn’t slept well the night before and had been up since 5:30 am myself. I was tired, achy and irritable. When Andy gets up early that means more time that he has to just hang around and wait for me to take him to his “Program.” So here we are, me trying to get a few things done and get some coffee into myself while Andy dashes off to get dressed. Then the noises and ticcing start. “UGHHHH UGHHH UGHHHH WHOOOOOOP”
“SHHHHHHHHHHHHHHHHH” I hiss at him. “Allie’s sleeping!!” (His older sister who didn’t get home from work until after midnight) Well this goes around and round for a little bit; Andy either ticking or responding to my exaggerated whispers of “quiet down”, with “I want to see Carrie” (or other wants) in his very loud voice. He could tell I was not happy with him which of course only stressed him out more. All I could think was if he woke Allie up she was going to be a BEAR!
Then something interesting happened… it had been a few minutes since I had quietly growled at him to “quite down”; I was at the computer and Andy was sitting nearby in his glider rocker. He reached over to me and took my hand and starts to pat my hand and say pat-a-cake. I looked over at him like he had six heads and told him “andy you don’t do that, that’s for babies”, without missing a beat he reaches out to my open palm and wiggles his fingers against it saying “tickle tickle tickle” (another game we played when he was older, maybe 8) It was then I realized that he was trying to make up with me… to get me to love him. I looked at him and my heart melted. I asked him if he wanted a hug. He smiled at me and said yes. So I got up and leaned over him in his chair and gave him the biggest hug, and whispered in his ear “I love you sweetie.” And as I hugged him, I heard him give this huge exhale… a sigh of relief… 
I think it is so interesting the way Andy thinks and tries to connect. He wanted to make sure everything was ok. He thought of what I would have done with him when he was a little boy, and tired to engage me in that. I was just glad I “got it!” and proud of him that he tried so hard to repair the tension that had been going on… You never know when these guys will amaze you!

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Sleep issues and Autism

by janneane7 on 04.05.08 - public

I am way backed up reading things on here due to absolute craziness with Andy's adult services, because of all the autism stuff going on right now for...

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I am way backed up reading things on here due to absolute craziness with Andy's adult services, because of all the autism stuff going on right now for me at work.
Anyway I was sympathic to the sleep is overrated post. LOL! Talk about the story of my life... Today I was wearing a button (pin) that says "Sleep is something other people get" and it has an autism awareness ribbon on it.

Anyway I wanted to share some things that worked for Andy
When Andy was 3 & 1/2 he stopped sleeping at night. He went to bed at 8:00 every night, would sleep until 12:00 or 1:00, maybe 2:00 and then usually be up for 3 hours, sometimes for the rest of the night. This happened on average 6 nights a week. It was a nightmare!!!!!

After 9 months of this I got rid of ALL dairy in his diet. 6 short weeks later he was sleeping though the night EVERY NIGHT. I did this because I had tried everything else I could think of and nothing worked.

Then I got to chatting with the Mom of a child in Allie's kindergarten class. Her NT son had a dairy sensitivity  which caused sleep problems, irritability and dark circles under his eyes. (all documented by his pediatrician) who suggested removing dairy.
 
I thought OK andy has all those too so I tried it... (this was way before the gluten and casien free diet days) I was absolutely amazed at the change.

Later when the bipolar cropped up the sleep issues came back.

One of the things I found was noises that the rest of us would never hear, cars going by, an early morning trash truck, a dog barking, etc... would wake him. Because of his sensory regulation problems he coudn't get back to sleep.

Some things that helped were Melatonex (which is time relased) and also having a fish tank in his room. The soft light from the tank acted as a night light and the soft sounds of the filter helped screen out noises which helped him sleep. 
This is also when I went with a heavier blanket for him. I got him a 100% cotton quilt, which while fairly thin (not bulky like a comforter) weighed more and so provided deep pressure for him.

Some other things I have used are:

dimming the lights or not having so many on starting about 90 minutes before bed

no loud tv or video games on for 90 minutes before bed

a calming betime routine

a hot bath with lavendar oil and epsom salts (this is really terrific!)

Using a couple of drops of lavendar oil on a difuser in his room

Andy still gets up a night but it is only to head to the couch. Once there he goes right back to sleep (he likes the sensory pressure on his back of the back of the couch)

I don't miss those days of no sleep and it's nice to have an arsenal of things I can use to help with sleep problems!

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Ethics

by janneane7 on 03.12.08 - public

I got an interesting e-mail yesterday from the person at DMR who handles Andrew case.
I was told that the DMR people and the people from Andrew's adu...

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I got an interesting e-mail yesterday from the person at DMR who handles Andrew case.
I was told that the DMR people and the people from Andrew's adult program had a meeting about Andrew (well probably more about me) without my knowledge.
From what I understand this is completely legal to do, however ethically it doesn't seem right.
I know that they didn't tell me because the adult program is complaining (to DMR) about my asking constant questions and wanting to know the whys and why nots of what is going on.
I had already set up a meeting to ask questions of DMR about my concerns.  Now a 2nd meeting has been added so I can meet with DMR and the adult program honchos. (And oh boy do I suspect that going to be ugly!)
I am just so unhappy about what is going on and the way I am being treated (which is like some nutty bitchy mother who needs to shut up and go away.)
It is wearing me out and leaving me worried for Andew and his future. 
Why do these people not understand that I want what is best for my son? Do they not think that is they were in my shoes that they wouldn't do the same?
It is just so sad.

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The First Signs....

by janneane7 on 03.07.08 - public

Age 20 months... when I told the Pedi that Andy hadn't added any new words to his 15 word vocabulary in 4 months, AND that he had developed pretty bad...

It's Deja Vu all over again...

by janneane7 on 03.05.08 - public

Just before Andy turned 8 (way back in 1993) we moved him from a private school for children with autism, to 1st grade in the public school system. He...

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Just before Andy turned 8 (way back in 1993) we moved him from a private school for children with autism, to 1st grade in the public school system. He would spend the majority of his day in a self contained class but he would also have opportunities to be in the regular 1st grade class with his peers. We did this solely because we wanted to offer him the opportunity to be with typically developing peers. We also felt that it would be much easier to do this while he was young (so he would be more easily accepted by his peers) rather that wait until he was older and more “ready,”

At the time we placed Andy in the public school there was only one other student in Seekonk with autism and he was 3 years old.

Although that 1st year definitely had some big struggles Andy did ok and I was happy, for the most part with his placement. He made friends even though his language was considered to be at an 18 month old level and he got invited to Halloween and Birthday parties. He loved being with the typical kids and seemed to like school.

At the beginning of his second year in the public school his self contained teacher left on a 1 year maternity leave. The school, trying to do their best brought in a former teacher from the private school with autism as the “permanent sub.”

The year started out ok but the challenges continued. The outside (private) Autism consultant (paid for by the school) spent about 4 hours per month offering his expertise to the teacher on the best way to help Andrew be successful. The teacher for the most part did not follow his suggestions.
The year ended on a so-so note and I was less happy than the year before.

We discovered at the beginning of third grade that the permanent sub would be staying on for the next school year, as the regular special ed teacher decided to take one more year off.

It didn’t take long into the school year to realize that things were going downhill.

Andy was starting to have serious meltdowns in the self contained class. The more difficulties he had, the less opportunities for inclusion they offered him. The Autism consultant and I spent untold hours trying everything we could to help the special needs teacher put the proper supports in place for Andrew so he could be successful to no avail.

There were meetings on top of meetings on top of meetings. Still, Andy’s meltdowns became more frequent and more intense.

At the same time I was treated like some kind if irrational parent who was asking for services that couldn’t be provided. It didn’t matter that the autism consultant and I were doing our very best to help the teacher, things just got worse and worse.

By early October Andy was being suspended from school (for having meltdowns) on a weekly (or more often) basis.

I was at my wits end and distraught at what was happening to Andy. The school suggested taking a closet and making it into a room for just Andy. (I said no)

When Andy would have a meltdown they would rush all of the other students from the room telling them that Andy was dangerous. Andy would be left alone with his 1 on 1 aide until he calmed down.

Then came the day of reckoning; I walked in the classroom, to pick Andy up because he had been suspended, yet again. And what did I see? Andy’s visual schedule had purposely been set up that day with the wrong information. And what did the aide (confidentially) tell me? That on some days the teacher would let Andy walk behind her desk to look out the window but on other days she would yell at him and force him to get away from the window. Andy was so stressed out and confused it was no wonder that he was having severe meltdowns.

And why would she do this? Well my Autism consultant finally shared with me that the teacher had asked him out on a date the previous spring, and he turned her down. She was very embarrassed and angry when he said he was intersted.

I also finally understood that the teacher and the school principal (who I had a few run ins with over the suspensions) didn’t like me and did not want me around.

How best to get rid of me? Set Andy up to fail so he would have to leave.

They got their wish when when I pulled Andy out of school that very week. I kept him home for 3 months until I negotiated a new placement with the school system.

So what does this have to do with Déjà vu?

Well after yesterday’s fiasco with the staff person at Andy’s Adult program, I contacted the head of the adult program to apologize. I also called and left a message of apology AND sent in a personal letter today to the staff person to apologize.

You would think my mea culpas would get some kind of reaction. Well, I got no note home today in his note book, (the very 1st time I have not gotten a note home) even though the staff person was there today. I also got no response from the head of the program, even though he was there today as well. Instead I got a strange note from Andy’s job coach saying that they have no interest in e-mailing me or sharing any information other than any changes in Andy’s “normal” day.

That was when the Déjà vu hit me.

Maybe the people at the adult program won’t set Andy up to fail so that they can boot him out. Heck they would loose money if they did that! BUT I truly believe they are bothered by my trying to be involved and have decided to shut me down.

I was told years ago that when your child becomes an adult that often times parents are urged to step back, relax and let the day staff (or group home staff) take over.  I remember laughing hysterically when I heard that and saying “well not this Mom!”

I was also told this past October (by a staff person from Andy’s adult program) that the managers and staff were perplexed by me and my involvement with Andy and his needs. They had never seen any parents who were this involved.

It was then that I understoof that his adult program had not experienced the Parents of kids with Autism “the next generation” (you know, parents like all of us on Foggyrock) where parents are so involved. Parents who make sure that their sons and daughters are learning, safe, happy and feel fulfilled.

So I think it is Déjà vu all over again, with me up against people who think they know what is best for Andrew or who resent parents being involved and trying to offer their assistance.

I will not let their passive aggressive behavior get me down. I am going to chart their “behaviors” so I can eventually TRY to make a case for getting enough funding to set up a program for Andrew from home. (Right now he would only qualify for 4 hours a week of support funding.)

I am discovering this is going to be a much longer and harder road than I ever anticipated.

I didn't give up before, and I will not give up now either.

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PECs and Visual Supports

by janneane7 on 02.29.08 - public

I was reading the post about PECs and it got me thinking.

I LOVE anything for our kids that is visual in nature. From my experience I have seen th...

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I was reading the post about PECs and it got me thinking.

I LOVE anything for our kids that is visual in nature. From my experience I have seen the amazing things that Andy has learned through visual suports and the ways they have helped him. But I also know way too few parents use visuals because they don't think their kids need them.

I think they don't stop and think about all of the visuals that they use themselves every day and how challenging their own lives would be if they didn't have them. For example: phone books, cook books, post it notes, grocery lists, appointment cards, day planners, calendars, the TV guide... the list of visuals we use daily is just amazing!
 
I also wanted to say for those who don't know the difference, that there is a big  difference between PECS (the picture exchange communication system) and visual supports.

PECS is a communication system, a  methodology for children to communicate their wants, needs, and later as they become more adept, their thoughts and feelings.

Visual supports on the other hand are any way of presenting information in a visual manner. Social Stories can be visual support because you are supporting the words you read to  your child (for pre readers) with pictures. For children who read, the written word (with or without pictures) is a visual support.

There are ALL kinds of visual supports!

With my son we never used the PECs program because he had some language and could say milk, juice, cookie, outside, etc... So we used a visual aschedule of all his day's activities.

(To be 100% honest here, I have to say that our autism consultant had to nag me for nearly 1 year before I finally started using a visual schedule with Andy. I was SO STUBBORN!! I would say "Andy knows his schedule", or "he can say some words so he doesn't need pictures." I was such a silly woman... I had an autism consultant who knew what he was doing but I wouldn't listen. Finally though because I kept complaining about Andy's behavior, I said "OK" and let the consultant show me how to do a visual schedule.)

With Andy's schedule I set it up from the time he got up, until he got on the bus, then beofre he got home I would put up the pictures for the afternoon until dinner, and after dinner it was the schedule until bedtime.

Andy removed pictures as each activity was done. This vastly improved both his language and his behavior. Over time "go check your board" was the most heard sentence in our house. He loved always seeing and knowing what was coming. He also learned the days of the week, concepts like now, later, today, tomorrow, yesterday, next time, soon, AND he learned how to negotiate and make choices. I loved to offer him choices. For example "when do you want to go to McDonalds? Friday or Saturday?" Andy might point or say Sunday. That allowed me to think for a moment then say ok Sunday is fine or "No we are going to grandma's on Sunday, (I'd point to the picture) we can do McDonalds Friday or Saturday."

I cannot say enough about the importance of using visuals.

Also I know some of you have talked about SCERTS and mentioned Emily Rubin. When she lived in Mass, she was our SP&L consultant. She went into the school and developed a color coded visual support program that was AMAZING in helping develop Andy's language.

Andy had a color coded sentence strip with squares that were for the agent, the action and the object of a sentence.
So the agent might be green the object might be red and the action yellow. Then he had a book full of pcitures where the agents, the actions and the objects were on backgrounds of the colors that matched.

The speech therapist could talk to Andy about something from his day or take a photo of him at a particular activity (say in gym) and say to him. What did you do in gym?

She would then work with Andy and show him how to match the colored picture to colored squares on the strip that would produce the sentence "I" (the agent) "played catch" (the action) "with the ball" (the object).

You cannot believe how his language blossomed as the speech and language therpist used this method with him!!
You should also know he was about 15 at the time!!!! Imagine how using this with young children would help their language grow?

As I said, I am a firm believer in the importance of visual supports!

I've included a link to an awesome website too (Linda Hodgdon, the visual guru!!)  where you can get great information and sign up for a free newsletter. 
www.lindahodgdon.com

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Book for siblings

by janneane7 on 02.08.08 - public

With the previous sibling discussion I thought I'd make a plug for a wonderful book written by 12 brothers and sisters of children on the autism spect...