A Heartbreak

A Conversation – “The Training School” revisited

Posted by TakingItAStepAtATime

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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…..

 

We must not forget the water bottle

Pit Stop

Posted by TakingItAStepAtATime

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A few days ago, DC was ready and waiting for his transportation to arrive to bring him to work. I was getting ready for work as well. The car arrived a little bit earlier than usual with a substitute driver. DC left and I went back to getting ready. Normally I leave for work about 5 minutes after the car leaves, but because it arrived early and I was not completely ready, it took another 15 minutes to get out of the door.
My car was parked in the driveway behind the house so you can not see it from the front of the house. I drove out, rounded the corner and headed up the driveway to find his transportation car at the top of the driveway. My initial reaction was one of panic. I was sure that something was wrong,  but the driver was just sitting in the car. Then I noticed that DC was already getting out of the car so my next thought was that he decided he had to use the restroom. I got out of my car and asked what was wrong. The driver told me that he had forgotten his water bottle and was so obsessed about it, she felt she HAD to bring him back to get it. She was hoping that I would still be home. Granted, I am happy that he is so aware of his hydration and so attached to his water bottle. Drinking water was not at the top of his list a few months ago, it was always a battle so I am glad that it has moved up a few rungs on the ladder. Coincidently the one and only time he forgot to bring his water bottle to work since his first seizure (I was at the time convinced it was due to heat), just happened to be the day he had his second seizure – hmmmm. I don’t know if he put that together in his mind or if this is just a straight out ‘regular’ obsession, but he does not want to be without it at work.
Now there have been plenty of times when DC was still in school that he tried to get his school bus drivers to stop so he could run into a random house to use the bathroom. (There have also been times, not so long ago while out for a walk when I had to chase him as he was running up some strangers sidewalk towards the door because he decided that he had to use the restroom).  I know how he can be when he forgets something as well. The driver said he kept poking her on her shoulder from the back seat. I get it. But, his school bus drivers, when they knew they had to bring him back home, would always call me to see if I was still home or if I could turn around and come back to meet him. This driver did not try to call and was making no attempt to even get out of the car. I wonder just how, from the driver’s seat with the car running was she going to check to see if I was home? You can not see my car from the front. She did not get out of the car – she just let him out and as I said, under normal circumstances, I would have been gone.
Hopefully in the future someone will call me – yes, I made that clear – very clear.
So how would this particular scenario have played out had I not have been there, you ask? I know exactly how it would have gone.
– DC would have let himself into the house to get his water bottle.
– DC would have left the front door wide open upon exiting the house and returning to the car; prompting the driver to ask if Mom was home. (He never closes the door on the way out, only on the way in – I do not know why.)
– “Yes”, would have been the response – his standard reply to almost any question.
– Driver would have driven away leaving my front door not only unlocked but wide open all day.
– Later that afternoon – assuming all of my possessions were still in the house , his after-work aide would have called to inform me that he found the front door wide open.
– Me,  never knowing or hearing about the forgotten water bottle retrieval mission that morning from DC or anyone else, would have assumed that I had  forgotten to close the door (even though I distinctly remembered doing it).
– Adding further fuel to the notion that I am losing my mind.

*****
Just an FYI – DC is 24. After years and years of training (a topic for another post) he is and has been able to get into the house himself after work. He has either me or staff there but there may be times when someone might be stuck in traffic or late for some other reason and before he had staff, I was always in a race with the bus. I wanted him to be able to get in, lock the door, call me and wait for me or his aide. Since he began having seizures, I do not want him alone for even a few minutes. My point here is – you don’t bring him home with out calling me or letting me know.

Costume Choices (or not)

“Jim Dear?” – Not this year….

Posted by TakingItAStepAtATime

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So Halloween is upon us.  It is already September and we are a little bit behind schedule this year. We usually have our costumes chosen and purchased in August. We did pick out our “official” Halloween night costumes way back in April or May so we are not 100% behind, but we are still behind. There are plenty of parties to attend for which DC must have different costumes (gotta love this boy!).
Okay maybe we like Halloween just a little teeny tiny bit -but we’re not obsessed or anything….
Last week we discussed what party costumes he wanted to wear this ‘Holiday’ season. This is always a little bit of a challenge.  At times the costumes that DC requests are just people that he likes who happen to be wearing regular everyday clothing, or it is an obscure character that nobody knows but him (he might get that from me).  Most of the time there is no such costume available so my mission is to come up with something or make up something that at least in his mind, makes the point.

The one costume that continues to make the list from the time DC was very young is “Jim Dear” from Lady and the Tramp.
(sigh….)  A man in a suit…..
Not my idea of a Halloween costume, but – this is not about me….
……not ALL about be, anyway.

 But, this year I was prepared.
Last October we attended a fundraiser/gala with Tony Orlando. The gala had a 1940’s theme. It was not a costume party, it was a theme, but in keeping with DC’s love of costumes, I bought him a 40’s style hat to wear with his suit. There was also the added incentive to get him excited about going to the event of calling the hat and suit a costume.  While I was shopping for said hat, I came across a derby style hat that closely resembles the hat that “Jim Dear” wears. I purchased that to save for this year.
While looking for items to make a “Timekeeper – Spy Kids – All The Time in the World” (yes, we must use the proper and entire title) costume last year I came across a tremendous amount of steampunk costumes.  I discovered them too late for last years’ costumes (they had already been chosen and we can’t mess around with the costume line-up)  but I knew that they would be a great option for this year.
2015 would finally be the year of “Jim Dear”.
I had everything ready when we sat down to choose his costumes. I had a choice of two suits up on the screen, I had a few options for “Lady” stuffed animals for him to carry. I even found a “Tramp”…. and I had the hat.  I was excited because I knew that he would be so excited when he saw that one of his costumes would be “Jim Dear”. I saved the surprise costume for last.
He chose a Disney Character – surprise! He also chose a character from a television show – whoo hoo! – a current television show – bigger whoo hoo! When we had only one more to pick, I started to wonder why he hadn’t yet brought up “Jim Dear”. I thought he may have been so overwhelmed by looking at all of the other costumes that it had just slipped his mind, so I opened up the windows that I had saved, expecting him to be over the moon….
He said “No! No, Jim Dear!”
What ?!?  
“No, Jim Dear!”
I asked him again just to be sure he was not confused, I showed him the hat that I already bought. I showed him the photos of the suits and stuffed animals – “NO! Jim Dear!”
sigh…….
Anyone in need of a black derby hat complete with decorative feather?
– in great condition – never been worn….

More short stories

Posted by TakingItAStepAtATime

or…. “Short Stories; the Sequel”

Below are some “short stories” (statuses) that have been posted on my own and my public Facebook pages – too short to qualify for a blog post, although many have turned out to be the inspiration for an official blog post. You may have seen a few of these before, probably not all though.

I am in desperate need of a haircut so I have resorted to wearing a headband for the last couple of days – yes, it is THAT bad. The headband, like anything different with my hair was not going over well with DC.
“Take head—band off!” – “Mom, your hair is a ‘de-aster” (he loves to use that one). There were many times that he just tried to grab it right off my head. Today, as I was on the phone not wearing a headband he apparently decided that I needed it and started trying to shove one on my head over the telephone. #ICantWin
……..
I told him it was very late and he needed to get to bed – it is after midnight. Realizing it was now Nov. 1st – he could not go to sleep until all of the calendars were changed.



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I told DC that he had to get dressed up for the party tonight……. “No!!! No Dresses!”




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T-shirt day at camp… “It’s a major award”


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DC went for his EEG today. I was having a hard time explaining it to him beforehand so my friend sent a pic of her daughter (DC’s good friend) smiling during her EEG. I think it made him feel better. He did a great job today. I was very proud of him and he was very proud of himself!


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DC is now resorting to leaving his shopping list in my purse – found this when I got to work this morning. (I really don’t think I need a list, he asks for the same things every time)







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Second order of business – “computer” because this is all I have been been hearing about all  day on the train. #AndWhatDidYOUDoInLondon‪



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And….. I got my first dandelion bouquet of the season!




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New Band-Aid supply – I wonder who gets to clean this up?







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In anticipation of the Easter Bunny, I suppose… DC went to bed at 9:00! Seriously, 9:00! Happy Easter!




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The ‪#‎Drwho ice cubes were just eh. But we can also use the trays for candy, so we’ll try that next time




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It turns out that the new ‪#‎DrWho pajamas are a bit too tight. Next size up is on the way, but since he won’t take them off, these can’t be returned. Happy almost birthday to me as I will be the proud owner of this set….eventually




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Yesterday was DC’s last day of camp. The last day is also always “Awards Day”. When DC came home I asked him if he got an award. He said he did. He didn’t have anything with him so I asked him where it was – “At the camp”. (I don’t know if he actually won an award). I asked him what award he won…..
“Best Camp Ever!”
…..



Enchanted is on the Family Channel this morning. He won’t sit down and watch it because it is the weekend and weekends are for his computer. So here he is searching through his DVD’s that are filed in a filing system that is understood by no one but him, for Enchanted – so he can watch it on the computer. Happy Saturday!






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Band-Aide art







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We might be a little bit obsessed…



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HE DID IT! 40 minutes!!! You do not know what a big deal this is! I thought we were done for when I heard 40 minutes (and an IV which nobody told me about) – it was shaky but he did it! – first stop – Wings!
He is sooooo proud of himself!


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Extremely annoyed at DC’s IP (no “E” – he is out of school)
“Dude, What! Are you kidding me?”
Dude???? I called his caseworker “Dude” …Dude…..
I don’t even know where that came from but I am sure it is still 100% better than the “colorful metaphors” I had rolling around in my head at the time….
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DC, always obsessed with Ella’s letter to Prince Char -he recites it often word for word –  decided he needed to write it all down. He only needed help spelling “solution”.





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DC went to an ARC activity tonight – dinner at a Chinese Restaurant. Yes, he won’t eat Chinese food, but usually he can find some chicken or wings or something….
Unfortunately he found none of those so dinner there consisted of jelly beans, fruit and ice cream. Yep, this is him “making” himself a bowl of jelly beans.





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One of the highlights of our “looking around day” (day trip – to the rest of the world) on Sunday was the giant whoopee pie WITH confectionery sugar!




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He announced that he was going to shave “all by myself” ( translation: “stop following me, Mom“) – taking a picture to cover up the fact that I’m following, is not really following, right?



Happy Wednesday!

No No No….. “Green” Peanut Butter Only!

Posted by TakingItAStepAtATime

The other day Doug called before he came over; he was stopping at the grocery store and asked if I needed anything. I do not like going to this particular grocery store and avoid it all costs…. but it is unfortunately the only store that I can find that sells Teddie Peanut Butter – All Natural – No Salt Added. Now there are plenty of places that sell Teddie All Natural, but the “no salt added” is not easy to find. At one point in time, I was ordering it on line directly from Teddie. Since he was offering, I asked him to pick up a few jars.

He brought them over and put them on the Peanut Butter shelf,  upside-down in the cabinet. DC was relieved because he had already told me many times that day that we were out of Peanut Butter – many times… so many times that I was sure I would be presented with one of his shopping lists at some point during the day.

The following morning he asked for the peanut butter. He already had his bagel toasting when I opened one of the new jars and saw that it was chunky – Super Chunky to be specific.
All together now…….

OH NO!

He saw it and I saw that look of panic come over his face immediately. I pulled out another jar – Super Chunky as well! Only one more jar to go…….. it was creamy! PHEW! Breakfast was saved!
I really do not know why he will not eat chunky. He loves peanut butter, he’ll eat peanuts – but he will not eat chunky peanut butter.

I remember once, back when DC was probably six years old, when peanut butter was the only thing he would eat for lunch. I went to make him a peanut butter sandwich and discovered that I had mistakenly bought chunky peanut butter. At this point, he had never had chunky so I decided that I would give it a try. I thought since his love for peanut butter is second only to my own that he would get past the chunks and eventually eat it.

DC was non-verbal at the time and just kept signing “No” and “Green”. I had no idea in the world what he was trying to tell me. He then proceeded to pick every piece of peanut out of his sandwich, all the while signing “green”. Removing the peanuts did not really work all that well, but it did make a huge mess – so don’t try this at home.

… and I never did figure out what “green” meant that day.

When we went grocery shopping the next day, I had completely forgotten about “green” and what it may have meant. While we were in the peanut butter aisle, DC again started signing “green”. Finally, apparently disgusted with me, he reached for the peanut butter (this was back in our “Skippy” or “Jiff” days). It was only then that I realized that the creamy had a green cap, while the chunky was blue.

How had he noticed that when I never had? He didn’t speak and honestly never seemed to be paying attention to most of what was going on around him if it was not directed specifically towards him. Apparently he was paying attention to so much more than I was giving him credit for at the time, and he was/is definitely serious about his peanut butter.

A chip off the old block…

“I am so proud of ME!!!”

Posted by TakingItAStepAtATime

I promise that you all will not have to read about every single test DC has to take but this one was a huge accomplishment for him – HUGE!

A year ago…. even a couple of months ago, I would never have attempted an MRI with out the benefit of sedation (his, but these days it might be beneficial for me too :) ). Never! It just would not even have been a consideration.

He has been through so many appointments and tests lately that I was really hoping that he was just getting used to it and maybe, possibly he would be able to cooperate. I mean he had blood drawn – that was major. Even the EEG was quite the accomplishment for him. Knowing now just how long all of these tests take to schedule to begin with, I did not want to wait the extra week or two or three for an appointment to sedate.

I talked to him about it the entire week before the test. I showed him pictures, I showed him videos. I explained that he had to do nothing else but stay still. There was nothing that was going to hurt or pinch. They were going to take pictures of his head while he was inside the machine. I have only had one MRI myself, for my arm/shoulder. It wasn’t fun but it only took about 20 minutes, so I was hoping that after all he had already been through he would be able to manage it.

We arrived at the hospital in the morning. Grandma and DC read a book while I filled out pages of paperwork. He did not seem nervous at all.



He started getting anxious as soon as the nurse came to say that they would be calling him in shortly. Lisa, our “guide” for the test, came to get us. We went into another room to answer more questions. DC was now moving into “close to extreme anxiety mode” and I am sure that Lisa was now concerned that he was not going to be able to do this. This is when she told me that there would be an IV involved………

Lovely – now I am a big fat liar. No one told me about this. I never had any sort of IV when I had my MRI. Maybe I was supposed to know this but seriously, up until a few months ago neither DC or I have never really ever had to have any kind of tests like this so I really had no idea. Of course I have had blood work and the one MRI and maybe an x-ray or two , but other than that there has been nothing for either of us.

Just so DC would not think I had lied to him and because whatever the consequences, I always tell him the truth and what is going to happen – I explained that he would have to have an IV in his arm, not like the needle they used when they took blood but just a little poke like when he was in the ambulance. I told him that I was sorry I didn’t tell him before but I didn’t know. No one told me. He seemed all right with that explanation but I could see he was getting even more nervous. She told me that they would take pictures for 30 minutes, bring him out to give him the IV for the last 10 minutes of the MRI.

40 MINUTES!!!! Now I was absolutely sure we were done. I was positive this was not going to work. She told me the worse case scenario if he tried and just could not stay still that long would be “conscious sedation”, but…. we would have to make a new appointment and come back another day.

Thankfully, he did not have to change out of his clothes because that would just be something else for him to obsess about. He did have to remove his glasses – not happy. I was able to go into the room with him and hold his hand. It was torture standing there watching him. He had a difficult time staying still, but he was still enough through enough of the test that they were able to get what they needed. At one point I did make them stop and take him out. I could see he was getting more and more agitated. I didn’t want him to get to the point where he would not go back in. They attached a mirror to the helmet/bracket that was holding his head in place so that he could see me. That seemed to help a great deal. He was able to go back in and finish the first 30 minutes.

They brought him out for the IV. This was a bit difficult. He of course got very anxious and was struggling. I laid across his free arm and the two techs held his other arm. They managed to get the IV in and just when I thought we were free and clear, they determined that it wasn’t working. They had to do it again, this time in his hand. I think the tech was more upset than I was about having to stick him again.

DC and I sang a few rounds of “They Call Me Sir DC the Brave”  (luckily I had learned the words from the last test) all the while  thinking that this was definitely the end of the road. He was not going to stand for this. They managed to get the IV in before he even noticed and he was good to go. He did give us a few fake “Ouch” Ouches when he realized it was already in – just for good measure.
Amazingly enough he finished the last 10 minutes and it was over. He was so happy and proud of himself.

After he got his glasses back “I can see, I can see!” – our first order of business was to take this brave guy for wings – correction…. our first order of business was to cut off the  hospital wrist band. We can not wear that a second longer than necessary.

On our way to the restaurant I gave him the phone so he could call Doug. In his loudest – highest pitched voice, he screamed into the phone “I did it, I did it! I am so proud of me!!!!” 


He continued to yell with excitement during lunch and all of the way home where he fell asleep immediately after telling me “I am not tired!”

A few days later he received a Certificate of Bravery in the mail from his aunt. She was proud of him too and he was thrilled. There is nothing DC loves more than to have everyone to tell him over and over again just how proud they are of him!

But seriously, I could not be prouder of him. This guy never ceases to amaze me…….