Can you say that again? I missed it the first 40 times.

Posted by TakingItAStepAtATime

Knowing full well what I was in for, I took away DC’s computer privileges on Sunday evening for reasons that are not necessary for this story.

He is only allowed to use his computer on the weekends. This rule stemmed from the original rule of watching his DVD’s on weekends only. As he now uses his computer to watch his DVD’s, the rule was amended to include his laptop. He has an iPad and is allowed to use it daily, which he does. I have not had to make a weekend rule about iPad use… yet. I did, however have to put limits on it.

What is the difference, you might wonder? Watching his DVD’s becomes an obsession to the point where he does not want to do anything else. While on the computer he can have the same scene playing on DVD, Netflix and on YouTube on three different screens and alternate rewinding that scene between the 3 screens. It is rewind heaven! Because he cannot use his DVD’s with it, he has not reached that level of movie watching…err rewinding in multiple windows on the iPad.

Losing his computer on Sunday night meant he would not have the opportunity to use it again until Friday, IF the behavior did not continue.

And so it began…

“Mom, use it on Friday.”

“Mom, I promise never to do it again. I’m sorry! Computer on Friday?”

“Mom, I behaving.”

(Repeat, with some variation 122 times)

I explained that we would have to see what happens during the week before I tell him he could have it back on Friday.

Monday morning:

“Mom! I was a good sleeper. Computer on Friday?

Mom! I behave! Yaaayyyyyyyy!”

(Repeat 26 times before breakfast)

Finally, and with a great deal of apprehension because it was Monday and Monday’s have not been DC’s favorite day, by any means , I told him that we were not going to talk about this any more and if he kept asking, he would certainly not get his computer back on Friday.

With that, DC went upstairs and I waited for the fallout.

Instead, he seemed to take that time to think about it because I heard him reciting a line from one of his Disney shows; “If you live in my house, you have to follow my rules”. This also made me believe that he was actually understanding that he did not follow the rules and I was not just a “Mean Mom”.

It seemed as if we had turned a corner.

I did not hear about it again the rest of the morning.

When he called me in the afternoon to tell me that his transport had arrived and he was “going home nowwww”, there was no mention of “Computer Friday”.
Wow! He got over this one rather quickly.

Yay, me!

He called me again when he arrived home as always. Usually this call as well as the earlier call are scripted; he rarely goes off script – he tells me he is home and tells me what he and his aide are planning to do.

He not only went off script but he went off script rather loudly.

COMPUTER ON FRIDAY!!!!

Me: We’ll see what happens this week.

“Computer on Friday” continued after I got home from work.

Now really what I should have done was taken his computer away on Sunday for the original infraction and if the behavior continued, take it away again for Friday, because we all know that “Maybe” is not a word and “We’ll see”, if it means anything to him, probably leans more towards a “yes” than a “no”. But I was all in now, so I could not back down and change my mind.
(Please understand that even if I had told him at the beginning that he could have his computer back on Friday, all of this would still be happening as he would feel the need to verify that fact; over and over again.)

After answering the same question more than once and reminding him that we were not talking about this now, he decided to change his strategy…

“Mom, Going to Dad’s on Friday and use Dad’s computer?”

Sigh….

Me: No. when you lose your computer privileges, you lose them everywhere.

(Repeat this conversation 5 times)

In my infinite wisdom I thought that if I gave him a specific date and put it on the calendar, I might get a break from the continuous questions.
I marked Thursday on the calendar and told him that I would let him know about “Computer Friday” on Thursday.

“Mom! Come here!” (calling me to the calendar and pointing)

“Thursday to use computer on Friday!”

“Mom will tell me on Thursday. Use computer on Friday.”

“Mom! I am a good <insert eater, sleeper, dresser …..> Thursday to use computer on Friday.”

(Repeat 3,946 times)

You knew that was coming…….

Autism in the Old Days: The Spectrum, Cures and Treatments

Posted by TakingItAStepAtATime

(This post and it’s counterpart “Autism in the Old Days: Diagnosis via St. Elsewhere” are written strictly as a remembrance and as a comparison about how times have changed and how much in the dark we were as parents back when DC was diagnosed. It is about all of the things we did not know and how differently things are handled today. But over and above all of that it is about the slow process to the realization of not necessarily having to follow every direction laid out in front of us, just because the presenters, be it doctors, teachers or therapists, are supposed to be the ones that knew better. Having to figure out for ourselves that the way things were presented and taught to our children and us, as parents, was not always the best way to go about things.)

****

Back in the “Olden Days” (when we were all walking uphill in the snow to AND from school) when DC was diagnosed (the early 90’s) there was no internet to speak of. There was little information about autism readily available to parents. Yes, there were a few books that I’m sure every parent owned, but really not much else. We had to depend on our doctors and the school system.

One of the first books that I read was a book called “Let me hear your voice”. I remember that even though it was a book about “One family’s ‘triumph’ over autism”, it did not offer a lot of hope. Their child was diagnosed early; at one year of age. They had the resources to provide in home intensive behavior training, something that I would never be able to do.

As I mentioned in my last “Autism in the Old Days” post, DC was not officially diagnosed until he was 5, not for lack of trying, so the other theory that was in wide circulation at the time was that before the age of 3, a child’s brain could be retrained. If you missed that window, it was too late. I missed that window, again not for lack of trying.

I remember when DC was about 6 or 7, I was going on vacation – the first in years. He was going to spend the week with his Dad. I was anxious enough about that – not that I did not trust his Dad, but because I had not been away from him for longer than one of his overnight visits to his Dad’s – ever. But I also remembered that book. I remembered how the author went away on a four-day business trip and her child did not know her when she came home. I had to be talked into going by many, many people and still I really did not want to. I went and of course he knew me when I got home and all of that worry was for nothing. But this is what happens when you have to depend on little bits of information and are pretty much on your own trying to figure things out.

Back in the “Olden Days” there was the Lovaas Method. Yes, I had that book as well. Now-a-Days it is known as ABA. Again, this behavior training had not made its way into the school system and, like in “Let me hear your voice”, most folks that used this method had the resources to do this at home, 40 hours per week. I was a little bit leery about the whole thing. I thought a lot of it was harsh and really just cherry-picked a few ideas here and there from the book. (This is in no way an opinion or a judgement about ABA. I know that it has evolved over the years and is probably nothing like the original offering). It was quite a few years after DC left early intervention that the school system trained staff and designated a classroom to ABA.

Back in the “Olden Days” there was no spectrum, that we knew about anyway. Autism was Tommy Westphall, Rain Man and Bernard Rimland and his son (Autism Research Institute) We knew about no one or nothing else. These, our only examples of Autism, also did not offer parents much hope.

In my quest for information I remember attending a few seminars early on. One in particular given by a woman who spent many years as a Special Education teacher. A woman who I had met in a sign language class, who worked with autistic children, recommended this particular seminar and attended as well. The seminar was supposed to be about the progress that was made by many of her students over the years. It certainly was not. I recall one man standing up and saying “You are not offering us very much hope here!” and she was not. It was all just gloom and doom, so much so that the woman who recommended it, apologized profusely to me afterwards.

That was the last seminar that I ever attended.

Now-a-days we are bombarded with “cures” and causes on a daily basis. Back then, if something hit the news, it was a big deal and please remember that we were programmed to believe that there was really no hope and that we were supposed to be looking for a cure.

In 1998 came the “Break through” in the treatment of Autism. One mother brought her son in for gastric/digestive testing. Secretin was administered as part of the test. Internet was now available but still not widely used as it is today. I don’t believe I even had email until 1998, never mind being able to figure out the rest of the internet.

“Media reports of an individual child’s dramatic improvement after a single dose of the hormone secretin administered during a gastrointestinal (GI) procedure (Beck and Beck 1998) appeared on television and the internet.”

They were touting a cure. I did not even hear about this until I began receiving phone calls from friends, family and almost complete strangers. I have to admit that although we were still being programmed that a cure was the only thing we should be looking for, I was a little bit afraid.

I do not believe I have ever said this to anyone other than Sandy, my boss at the time, who made the mistake of asking about it and then had to listen and watch me bawl my eyes out because I felt guilty that I was afraid of this. What if it was real? How could I not have him treated? What if after he was treated and “cured”, I no longer had the same child? I felt guilty and felt selfish for even thinking those thoughts.

That being said, and I do realize that I have said it to the point where I should just make it my blog header:

My feeling of never wanting to change him has not changed, but he is older now and I worry about the future every single day.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

****

Even with all that DC has accomplished over the years, the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings and will long out live all of us. He will at some point have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers.

It was a confusing time for many of us. Now-a-Days, when something like that happens and we hardly blink an eye…

DC accomplished far more than I ever anticipated he would, despite the “no hope scenarios” we were offered way back then. Much of his accomplishments came when I got to the point when I stopped reading and listening to the way it is supposed to be done and did what I thought was best. We all hit that point eventually.

I had to learn on my own, to choose my battles and understand that he does not HAVE to learn to do everything that other children his age can do.

If he can not learn to ride a bike (and why the hell was that so important at one time?) then he can not learn to ride a bike. He has an adult trike and he is fine with that.

If he can not learn to tie his shoes, they sell Velcro now.

This is not to say I gave up trying to teach him things. It’s just that I let go of the things that are really not important. I let go of the mindset that he has to be like every one else a long time ago.

Because he doesn’t….

*******

The therapies and theories written about in this post should in no way be considered as recommendations or as proven theories. Like today, new theories and treatments come along every day (we had much less of it due to the lack of internet) but this does not mean that any of them are tested of proven. This post is about DC and I and what was going on around us at the time regarding autism.

******

Next Installment: Autism in the Old Days: Spinning and Stimming

‘

Small Battle – Small Victory

Posted by TakingItAStepAtATime

From my October/Halloween 2015 Archives and as I discovered this week…. a small victory:

Choosing my battles……..

We went away this weekend to NYC and Sleepy Hollow. We try to take a Halloween Weekend every year to somewhere either “Halloweenish”, Spooky, Historical or where costumes are involved. We will be going to a ComicCon the weekend after Halloween (that counts) so we decided to do just a quick overnight to Sleepy Hollow this weekend. Our usual Halloween destination is Salem MA, but we’ve switched it up the past couple of years mainly due to the fact that Doug is <insert colorful metaphors> of going to Salem – I, on the other hand, never tire of it.

We had already done a weekend in Sleepy Hollow a couple of years back. We did just about everything there was to do with the exception of the BLAZE. I did not know that in order to do anything in Sleepy Hollow in October, tickets must be purchased on-line ahead of time. Fortunately, once I discovered this and by the skin if my teeth, I was able to get tickets for everything else.

This year we thought ahead and got tickets for the BLAZE early. Since that was all we were going to do in Sleepy Hollow, we decided to first spend the day in New York City (DC’s favorite place), check into our room in Sleepy Hollow and go to the BLAZE at 9:30 PM (the only time available when we purchased the tickets).

I had not been feeling well all week and would have opted to skip the whole thing and stay home on the couch, but DC had already been told about the trip and he already added it to the calendar so that meant it was engraved in stone.

Knowing his propensity to over-pack DVD’s for the sole purpose of stacking them next to him while he watches YouTube on his computer, and knowing full well there would be a visit to a bookstore at some point during the trip, I told him that he could only bring 5 DVD’s and 2 books. I said it more than once. I just didn’t want to have to keep track of a bunch of unnecessary stuff and try to carry a bunch of unnecessary stuff. I just wanted to pack light and get this over with. (I did forget my jacket in the room, so I really couldn’t manage to keep track of the necessary stuff – turns out, they don’t ship forgotten things. We have to go back and get it).

5 DVD’s and 2 books.

“Okay Mom!”

He went about packing his laptop, his DVD’s, his books, and pens to edit said books.

“DC, how many DVD’s did you pack?”

“5 DVD’s – 2 books”

“Are you sure?”

“Yes, I promise”

When I went to grab the charger for his phone, I found that he already packed that as well. I found THAT to be a bit impressive. He is usually only concerned with his books, DVD’s and laptop.

I told him how proud I was that he remembered his charger by himself. He took that compliment and added that “I am proud of the 5 DVD’s and 2 books” – he was just pointing out the fact that I forgot to tell him in that sentence that I was proud that he followed the rules.

We spent the day in New York City. We visited all of his favorite places and headed out for Sleepy Hollow about 3 pm. All I wanted to do was sleep for a little while before dinner and the Blaze. In the room I was just telling Doug what a great job DC did packing only what I told him to and remembering his charger, when I noticed a good 15 to 20 DVD’s sitting next to his laptop. Now, this has been an issue before and the celebration over him being sneaky and figuring out that he could just hide them is long over with. I do have to give him props for figuring out if he packed his own charger there would be no reason for me to go into his backpack (a new level of sneakiness), but like Tonya in ‘All the …..small things’, I have to be the mother, even though I knew full well what would be in store for me after reprimanding him.

As soon as he realized that I noticed just how many DVD’s he had with him, it started…..

“I am sorry Mom. I will never lie again!”

“I am so sorry, Mother!”

DC only gets to use his laptop and DVDs on the weekends. That has been the rule for many years. Losing his computer privileges is the only thing that EVER makes any kind of impression on him.

“DC, you lied to me again. I told you the last time you lied to me that you only had one more chance before your lost your computer for the weekend. This was your last chance, so no computer for the weekend.”

(Seriously, as punishments go, this is really not much of one. It was all ready Saturday night. We would be going out soon and we were leaving the hotel the next morning, but this did not matter to him).

Now, 2 inches from my face……

“I promise to never tell a lie again”

“Mom, I’m sorry!” – those of you that know DC, you know that:

He is sorry for absolutely everything! Partially he believes “I’m sorry” will get him out of anything. Like a typical man, he thinks that saying “I’m sorry” even if he doesn’t know what he’s sorry about will get him out of anything or at least get me to stop talking. If he really wants to bring it home, he goes to: “I’m ‘ter-bly’ sorry” or “I am soooooo sorry”. He’ll even throw in a “Can you ever forgive me?” (movie line), if he thinks it’s necessary.

He says he’s sorry, WHILE he’s doing something he shouldn’t, and will continue right on doing whatever it is because he’s covered, he already said he was sorry. Or he’ll say he’s sorry when he’s about to do something he knows he’s not supposed to do. He’s covered, he said he was sorry!

I heard this and variations of this throughout the evening all recited 2 inches from my face. I won’t go into the amount of times I explained to him that just because he promises not to do it again does not get him out of the punishment he was already given. I understood that he was sorry and I was proud of him for being sorry…… believe me, it was covered and covered.

*****

We did enjoy the Blaze –

but every few minutes he reverted back into his “I’m sorry” campaign.

Back in the room, he changed his tactic.

“Mom, thank you for much for the trip”

“Mom, thank you so much for the dolls”

“Mom, you are my queen.”

“I love you Mademoiselle”

“I am being so good!”

I did explain to him as I always do that I never would think or say that he was “bad” – he is not bad; he just did something wrong – on purpose.

We went to sleep (remember, I am still not feeling well). 4 or 5 times during the night, I woke up to find this boy 3 inches from my face telling me that he has “Good Behavior” and “I promise never to lie again”

There are times when DC really does not understand what he has done wrong and I will speak with him and try to get him to understand – this was not one of those times. He knew exactly what he was doing while he was doing it. I can not just let everything go, even though at this point I really wanted to get some sleep. If I gave in now he’d know that I would give in the next time.

Morning came.

He hadn’t packed any paper to bring on the trip so he resorted to writing me apology notes on the inside of his books.

As many times as he brought it up, there was an explanation for him. I love him, I always love him. I was not happy with the choice that he made to lie and sneak but I am not angry at him. If he does not do it again he would not lose his computer again.

We left the hotel, looked around Sleepy Hollow a bit, had lunch and headed home.

Monday was a holiday but the weekend was over, which meant his punishment was over. It also meant that he could not use his computer anyway because the weekend was over. He double checked the end of punishment fact with me and was extremely happy to hear that he was correct in his assumption. We were home all day on Monday and he was quite happy not to use his computer, because Monday is not “the weekend”. But he knew it was ON for the following Friday and I never heard another word about it.

(He understands the word “punishment” from Full House. I originally never used that word – that was all him)

Update October 2016:

We just returned from a non-Halloween themed trip to Nova Scotia and New Brunswick. I am happy to report that DC, with out being reminded more than once, did stick to the “5 DVD” rule.

And as a Mom who just loves Halloween, I was very proud of his choices:

That’s my boy!

********************

#TravelingWithDC – New Brunswick and Nova Scotia

You are now entering #Haven – A place to leave your ‘troubles’ behind

Choosing my battles……..

Posted by TakingItAStepAtATime

5 DVD’s and 2 books.

“Okay Mom!”

He went about packing his laptop, his DVD’s, his books, and pens to edit said books.

“DC, how many DVD’s did you pack?”

“5 DVD’s – 2 books”

“Are you sure?”

“Yes, I promise”

When I went to grab the charger for his phone, I found that he already packed that as well. I found THAT to be a bit impressive. He is usually only concerned with his books, DVD’s and laptop.

As soon as he realized that I noticed just how many DVD’s he had with him, it started…..

“I am sorry Mom. I will never lie again!”

“I am so sorry, Mother!”

DC only gets to use his laptop and DVDs on the weekends. That has been the rule for many years. Losing his computer privileges is the only thing that EVER makes any kind of impression on him.

Now, 2 inches from my face……

“I promise to never tell a lie again”

“Mom, I’m sorry!” – those of you that know DC, you know that:

He is sorry for absolutely everything! Partially he believes “I’m sorry” will get him out of anything. Like a typical man, he thinks that saying “I’m sorry” even if he doesn’t know what he’s sorry about will get him out of anything or at least get me to stop talking. If he really wants to bring it home, he goes to: “I’m ‘ter-bly’ sorry” or “I am soooooo sorry”. He’ll even throw in a “Can you ever forgive me?” (movie line), if he thinks it’s necessary.

He says he’s sorry, WHILE he’s doing something he shouldn’t, and will continue right on doing whatever it is because he’s covered, he already said he was sorry. Or he’ll say he’s sorry when he’s about to do something he knows he’s not supposed to do. He’s covered, he said he was sorry!

*****

We did enjoy the Blaze –

but every few minutes he reverted back into his “I’m sorry” campaign.

Back in the room, he changed his tactic.

“Mom, thank you for much for the trip”

“Mom, thank you so much for the dolls”

“Mom, you are my queen.”

“I love you Mademoiselle”

“I am being so good!”

I did explain to him as I always do that I never would think or say that he was “bad” – he is not bad; he just did something wrong – on purpose.

Morning came.

He hadn’t packed any paper to bring on the trip so he resorted to writing me apology notes on the inside of his books.

We left the hotel, looked around Sleepy Hollow a bit, had lunch and headed home.

Monday was a holiday but the weekend was over, which meant his punishment was over. He double checked that fact with me and was extremely happy to hear that he was correct in his assumption. We were home all day on Monday and he was quite happy not to use his computer, because Monday is not “the weekend”. But he knew it was ON for the following Friday and I never heard another word about it.

(He understands the word “punishment” from Full House. I originally never used that word – that was all him)

A Conversation – “The Training School” revisited

Posted by TakingItAStepAtATime

Recently I wrote a post about a training school. I was a little apprehensive about writing the post because I know my friend Beth has had to place her son in a residential program for behavioral issues and safety. I know that there is a difference between an Institution (as the one in the late 60’s, described in the post) a Group Home and a Residential Program. I know she is trying to do what is best for her son and her family. I also know that she has to endure quite a lot of abuse from other parents about having to place her son in the program. Many treat her as though she is institutionalizing him or locking him away. This is hardly the case. She is trying to do what is best for her child with the minimal supports that are open to her in the rural area where she and her family live.

I know that this is not the situation she was hoping for, but in order to help her son and her family this was the only real choice that she had. She wanted to get the proper help for her son that they could not – try as they might – provide for him. She wants what every parent wants, a chance at a better life for him. This was not a decision she was happy about making, believe me – but she believes that this program is what is best for her son and her family right now. At this moment he needs more help than they can provide at home or in school.

I know that we can not judge other people’s children based on what we know about our own child’s Autism. To use the phrase once again – (I have used it plenty and I wish I knew where it originated) “If you meet one person with Autism, you have met one person with Autism.”

Beth and I had a conversation after I published that piece. Although I understand where she is coming from, she knows full well that many people do not. She agreed to let me use our conversation in the hopes that it may help people understand her situation. It was difficult enough for her family to have to make this decision without enduring the added pressure of other’s opinions.

Beth: “Unfortunately, it is still the only option for many parents to have their kids live elsewhere. If it wasn’t for my son’s aggression and property destruction, he would be living at home.

If there were better supports for people with disabilities to be able to stay in their homes and communities we would not need places like group homes and residential schools. The difference from back then <the time frame from the post> and now is probably the ‘reason’ for the placement. Now, it is usually a last resort after trying to support the person at home or because their needs are many and too complex to be supported at home.

Many people do not make the distinction from the training school/institution that you wrote about to the program my son is in. I have had so many other parents tell me they would never do “that” to their child. There are some horrible group homes and residential programs, not much different than an institution, just in a different location and given another name. There still needs to be a lot of change in providing better public school programs and home supports. We still have a long way to go in properly supporting disabled people in their homes and community. If that were happening we would not have had to outplace him like this”.

Me: Believe me, you were on my mind while I was writing it. You haven’t ‘done” anything to your child, you are doing what you hope is best for him and your family; because the rest of your family should matter as well. I agree, that people still do not make the distinction and there IS a difference, I know that. I wish more people did. I absolutely agree that there should be more home supports and school supports in place even if you do not live where it is convenient for people to get to. I would like to use this conversation in a post. I think the distinction needs to be made and can be made better by someone in your situation.

Beth: “That would be fine. I am doing my best to DE stigmatize the placing of a child in a residential school or group home. That is why I share our experience on Instagram. Too many people live in dangerous and unhealthy situations with their disabled loved one because they fear what will happen when they place them.”

Beth lives in a rural area where the school system could not provide the support that her son needed. They could not get or keep support in the home due to the distance many of the support people would have to travel. Many people are not in the position to pack up and move into an area with better supports in place. They visit him quite often. She is in constant contact with the staff and her son. He comes home for visits as often and for as long as he can handle. The goal here is to get him the help that he needs so he will be able to come home for good one day. To help him manage his anxiety and aggression so that he can come home.

They want him to come home…..