Flap like a Chicken

Posted by TakingItAStepAtATime

It has been a little bit of an odd week here in DC-land. Some plusses but just all around odd. At this point even the positives worry me since he began having seizures. Right before both he was hyper-aware and oddly communicative. I just haven’t relaxed enough yet to take the positives as totally positive. So, I worry.

On the plus side, he tried and ATE zucchini! TWICE! – That is MAJOR!

Most of the “oddness” we’ve encountered this week are not out of the ordinary things they just seem to be elevated.

I know I’ve written previously that DC does not cry – never has. When he hurts himself or is upset, he will yell or scream, but he never cries. Even as a baby his crying was more like screaming and he really never had tears. To this day, it is very rare for him to have tears. When he does, it is usually due to allergies and still even with allergies, tears are rare. He will at times use water to make tears so he can look at himself in the mirror and see “tears”.

He started taking seizure medication back in August with really no adverse side effects except for one day about 3 weeks in, he was watching a YouTube video and just started bawling, uncontrollably complete with tears and “ugly cry face”. This went on for a good hour. When I asked him what was making him sad, he said it was the Barney song.

(If anyone should be crying over the Barney song, it should be me. I have had to listen to that song for 24 years now. He’s been watching that show since before it hit PBS, back in the days when Barney was dark purple (and a little scary looking, if you ask me) and Sandy Duncan played Michael’s mother. Yes, I am still looking for that Barney support group.)

I chalked the crying up to the meds and I did inform his neurologist. It never happened again, until this week, when three times he went into the same over the top crying, like “overly emotional” me crying over a Hallmark commercial.

Each time he said it was because of the Barney song. The last time he did also say that he missed his Aunt Kim, who he is going to visit tomorrow. Now I have to wonder if it is/was a side effect from the meds why did it happen 5 moths ago and not again until this week?

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Mrs. H reported that on Friday, he came home from work out-of-sorts which seemed to stem from his immediate need to change his shirt. He couldn’t wait. Now clothing issues are ongoing here, but as annoying shirts go, this one really shouldn’t have caused him that much anxiety. Years ago, yes – but really not so much anymore. It was just a plain black shirt, no buttons, no pockets, no collar, no tags – pretty much, a long sleeved t-shirt, but it had to come off… immediately.

****

Today DC and I went to meet my mother for lunch. We were going to an Italian restaurant that we have been to a few times before. DC always has a hard time finding anything to eat there. They do not have even one item on “DC’s Restaurant Triad” – Burgers, Wings or Pizza, so I have to plan ahead when we go there. I have to remind him more than once and check the menu on-line after which he chooses mozzarella carrozza (but we must call them mozzarella sticks, even though they are triangles) and garlic bread also with mozzarella – always.

At the restaurant; his order placed, he heard me order grilled chicken and insisted on having grilled chicken as well! Now, this ‘boy’ loves chicken. He eats chicken just about every day, but it has to have bones. “Chicken with bones and sprinkles” (Mrs. Dash) or wings or tenders (tenders are not required to have a bone). He never wants chicken without the bone unless they are tenders. This…. another MAJOR plus in my book – a fourth menu option!

****

The minus… He got very anxious at lunch, which is not really all that uncommon. He said he needed to “flap his wings”. The restaurant was not busy and there was no threat of him hitting anyone with his flapping so I said it was fine but to try to keep the ‘clucking’ at low volume. He did, but I could see that it wasn’t working for him. I asked if he wanted to go outside for a bit. First he said no, but then he decided he would since he was done with his appetizer and the rest of our food had not arrived yet. Normally, he would think he was being punished if I asked him to go outside – I always tell him that this is not the case but that is what he thinks, so I was surprised that he agreed.

There we stood, on the sidewalk in front of the restaurant clucking and flapping. The clucking was even more intense than usual. The only way I can describe it would be that it looked like his head was motorized. I do not know how he was doing it. I have never seen such extreme clucking. We stood outside for a good long while until he decided he was ready to go back inside. We were not inside for very long before he decided he needed to go out again. More flapping more intense clucking. Eventually he calmed down and I could see a bit of a smile on his face so I knew this would probably be our last trip outside. We went back in and he was fine for the remainder of our time there.

He had a hard time; the minus – but really the plus side is that he agreed to go outside and he decided for himself that he needed to go back outside the second time.

****

I know that these incidents may not seem like a big deal to many of you. Years ago, all of the above would have been much worse but we are over a lot of that now or I should say that it all comes in lesser degrees now, so all of it combined plus the continuous repeating of random words as if the needle is stuck on a record and the out of control over the top laughing is making me nervous that he is gearing up for something.

He will be going to visit his aunt tomorrow. This will be the first time (other than when he is at his job, with “trained professionals”) that he has been anywhere without me, Mrs. H or Doug since his seizures started (our world has gotten much smaller) and given his odd behavior this week, his poor aunt will have to listen to pages of instructions tomorrow when she picks him up. Fortunately, she is used to me.

Over the years as I gave my lists of instructions to his Dad (I’ve always had many instructions even before the seizures), more than once he’s asked, “You think I am stupid, don’t you?” ……………………………………..

To the many other people who have had to listen to my barrage of instructions, I will say, No, I don’t think you are stupid. Yes, I know that you probably know all of this. On the slim chance that there might be one little thing that you do not know, I am going to say it. I will not feel better unless I say it out loud even though I am sure you probably already know it.

He is excited to go to his aunt’s tomorrow and I am sure he will be fine. I have every confidence that she is ready for my list and that there may be a quiz 🙂 –

Just kidding, no quiz…. maybe just on oral exam…

Yes, I am very fortunate that she has had many years to get used to me and is able to put up with me.

“Don’t you cry no more” #Supernatural

Posted by TakingItAStepAtATime

Earlier this month we attended Rhode Island Comic-Con in Providence. It was an experience to say the least.

(I have a lot to say about our visit to the Rhode Island Comic-Con. Some good; some not so much. Everyone we met was very nice. Now I understand that they are supposed to be, but we all know that it isn’t always the case. There were a few people who were just extraordinarily wonderful to DC, so I want to be sure I mention all of them. Because I have so much to say about the entire event; Autism-related and not, I have decided to split the story up into a few parts, by category rather than in order by the day)

Let me first say that I am a huge fan of Jim Beaver. I have been since his time on Deadwood. Jim Beaver was one of the reasons I became a fan of Supernatural – yes, Sam was Dean on The Gilmore Girls so I may have been leaning in that direction anyway, but Jim Beaver gave me the push I needed. DC is also very aware of the show, but other than Sam and Dean (who were not there), Jim Beaver (aka Bobby) is really the only other cast member that I knew for sure he would recognize. Why is DC familiar with Supernatural (or the “Don’t you cry no more” show) you ask?

Well DC loves music, but his musical choices do not usually come from what he hears on the radio unless it is a Disney song or a song from a movie he has seen. There are only a handful of songs that I can think of that he knows specifically from the radio – Carry On Wayward Son, just happens to be one of them. He zoned right in on the “Don’t you cry no more” line and it has been a favorite of his since.

For those of you who may not be fans of the show, Carry On Wayward Son opens the last episode of almost every season. DC picked up on that right away and as everything is related, he began watching the show.

We didn’t have a lot pre-scheduled for Friday night at Comic-Con. One op I had scheduled was Brent Spiner who had cancelled his appearance a few weeks earlier (“From this moment on, you are my mortal enemy!”) so I thought we would use Friday night to just go and get the lay of the land before Saturday when I was sure it would just be mobbed. We really did not expect to see many people or do very much that night, I just really wanted to figure out where everything and everybody was going to be. As it turned out, Friday was the best day of the event for us. It was not crowded at all and we got to do and see an awful lot.

As we were walking and looking around I noticed that there were no lines at many of the autograph tables. Then we came upon the “Don’t you cry no more” room. The first table belonged to none other than Jim Beaver (be still my heart) – he was not there but the tablecloth was not turned up covering the photos for sale as others were so I assumed that he would be right back. We did have a photo op scheduled with him on Saturday, but photo ops are usually very hurried, so I thought this would be a good opportunity for DC to see him and not feel so overwhelmed and rushed. When we went over to stand at his table and wait, a boy who looked to be about 12 came over to us and asked us if we were in line. DC, who seldom initiates a conversation or a greeting, took one look at this boy, who looked just like a younger version of his friend *Ron from Camp and excitedly in his high-pitched squeaky DC voice squealed “Hello there! My name is DC Last Name. How are you? It is nice to meet you!”. He grabbed his hand and shook it so hard the boy’s entire body was shaking. The boy was so very nice. He was not taken aback by DC’s squealing and excitement. The smile never left his face. He answered him, let him shake his hand again and told him his name (which unfortunately I do not remember). He then went back to stand with his mother just outside the room.

While we were standing there, I noticed Samantha Ferris at the next table. I asked DC if he wanted to go over there while we were waiting. He said No – he didn’t want to get out of line – even though we were the only ones in said line; we were in line and in DC’s mind, that was all there was to it. I told him that we would not miss Jim if we went to the next table for a minute. Samantha is a pretty woman with long hair so I knew he wanted to go over there if not for anything else but the long hair but…. he was in line. I finally convinced him that we could go and come back to Jim’s line afterward. He finally agreed.

Once there, he did get very excited. He told her his name and told her where he lived. Again, he was more conversational than usual. She was wonderful with him. She asked me questions but she also directed some questions to DC (which we know does not always happen). She asked how he became a fan and I explained the song connection. She sang a few bars of ‘Carry On’ for him – which just thrilled him to death. She asked him if the show ever frightened him. He said “No”. I began to explain to her how we talk about the fact that the show is only…. – DC piped in with – “Make-believe”. We talked about one of the loves of his life, Felicia Day (a recurring character) who he had the opportunity to meet a few years ago at NY Comic-Con. Samantha certainly added a new fan to her list that night!

DC and Samantha Ferris

As soon as we were finished there, DC immediately wanted to go “back to the line” (there was still no line) and Jim had not returned. Samantha told us he would be right back, so back to the “line” we went. DC started getting a little bit anxious while waiting but fortunately not too over the top. Someone ran by us and said “We’ll let him know someone is waiting” and before I had the chance to finish telling them that it was not necessary to rush him, they were gone.

Eventually when he did come out, he looked a bit out of sorts; not the “I don’t want to be here” out of sorts – he looked as if something was wrong or something had happened. I felt bad and hoped that the powers that be did not make him come out just for us. He apologized and said there had been a slight emergency, which I absolutely believe due to the almost shaken look on his face. Now I felt even worse. Of course the first thing out of DC’s mouth was “I have been looking all everywhere for you”. Then for some reason, probably because he was zoning out a bit at this point , he called him “Jake” instead of Jim or Bobby. He got his “DC picture” as he called it, so he was happy.

We turned to leave and there was the boy from earlier. DC again very excitedly , shook his hand, gave him a hug and told him he loved him (the asking permission before hugging anyone rule went completely out the window that weekend) – the boy, as before, went along with all of it thankfully. What an extraordinary child! I wish I could send him many gifts!

During the course of the weekend we ventured back in to the Supernatural room many times.

On Saturday he met Curtis Armstrong (Metatron – aka “The worst angel ever”), Mitch Pileggi (Samuel)

DC and Curtis Armstrong

DC and Mitch Pileggi

and Alona Tal (Jo). There was no explanation of character necessary for DC here – she is a pretty blonde and that was all he needed to know!

Dc and Alona Tal

Supernatural room = Success!

Saturday was even more crowded than I expected.

We had three photo ops scheduled on Saturday. I purchased Jim Beaver way back in July and the others at later dates. The only information listed when purchasing a photo op on-line was the day; Friday, Saturday or Sunday. When they did finally post the scheduled times I discovered that Jim Beaver and another were listed at the same time. I have to imagine that this happened to many other people as well.

On our way to the most unorganized photo op room I have ever seen, DC announced that he needed to “Flap his Wings”. It was just too crowded for him to flap where we were at the time but we did manage to find a corner almost under the bleachers for him to flap. I had him jump up and down a bit too while we had the space, just to try to get it all out. Then we headed to the area where the photos were to be taken. Jim Beaver was scheduled for 12:45 – 1:15 and the other was scheduled for 12:45 – 1:30. We we decided to get Jim Beaver done first. Explaining the conflict to a volunteer in order to find out how early we could get in line for Jim Beaver, I took out my printed ticket with bar code that clearly stated: You must present this ticket with the Bar Code and your e-mail address to double check the time I had written on the ticket. She looked at it and told us we could probably get in line at about 12:30. We walked around a bit and revisited the “jump and flap” area for one final go. Then we went back to get in line at the time she had given us. I gave the same volunteer my ticket and she said “Oh no, we can’t take those paper tickets. You have to get in that line over there and trade them in for cards.”

What?!?

I followed the direction of her pointing finger to the mob scene, she referred to as a line, and questioned the ticketing process. This was supposed to be our ticket. “I don’t know, I’m just a volunteer, but don’t worry; he’s not here yet”. Firstly, I can not tell you how many times I heard “I don’t know, I am just a volunteer” that day and secondly, the issue was not whether he was there or not, it was about trying to get closer to the front due to our time conflict. We went over and got at the end of the “card” line. While waiting and out of the blue, DC decided to hug the man dressed as Mr. Spock who was in front of us in the card line. Fortunately again, Spock had no problem with this random hug from a stranger. He explained that he has three children on the spectrum, so he was not fazed by it at all. We talked special needs programs for a bit until it was our turn to trade in our tickets. We finally made it out of that line with our “cards” but by the time we got back to the photo line the entire fenced in area was full and our place in line was outside of the roped in area. The volunteer saw us and yelled. “Don’t worry, he’s not in there yet” – again, not the point!

(I will revisit these paper tickets and photo op lines again in another post)

Doug, who unlike me can usually put up with just about anything, went ahead and spoke to a volunteer at the head of the line. Shortly thereafter a different volunteer came and moved us to the front of the line. I have written before that I do not generally look for accommodations for DC and I did not here. I always want him to try. I did purchase VIP tickets because of DC but this is not Comic-Con or the convention center making accommodations for my son, that is me paying more money to accommodate my child on my own. We did what we were supposed to do. We discovered the scheduling conflict. We planned ahead to get in line early, not earlier than anyone else would be allowed to, but as early as was allowed. We had the proper tickets, only to be told that we didn’t. So for anyone that might be wondering or is waiting to pounce; we were not moved to the front due to DC’s autism – we were moved to the front due to the total unorganized way that this event was run (there is more, trust me).

After all of this, it was finally our turn to see Jim Beaver. DC did attend one photo op on Friday night (paper tickets were accepted then and there was no mention of a card ticket). Because of the Friday op, DC was expecting Jim Beaver to be standing on the same side of the room as the person was the night before. He wasn’t – he was on the side of the room closest to the curtain where we entered. DC walked into the room, and headed straight to the other side never noticing Jim Beaver standing right there. DC was looking around very confused so I turned him around and brought him back to Jim, who was looking rather confused himself and probably wondering what was going on.

The photographer took one picture and asked if he would take off his glasses for another. DC, who does not like to part with his glasses immediately said “No”, but he did give in and give them to me. Now he was wearing his crabby face. As soon as they pointed that camera at him, DC being DC, immediately put on his big photo smile. One of the assistants commented about just how quickly he was able to turn on that smile. Yes, sir. That’s my boy – always the ham. One can not point a camera at or around him and not get that smile. As soon as the picture was taken DC’s only concern was getting his glasses back. He started walking out without even saying good-bye or thank you, he just wanted the glasses. He did remember his manners after being reminded. I do not usually have to remind him but I know that all that he was thinking at this point was getting out of there before anyone tried to take his glasses again.

DC (always the actor – wiping his forehead) “Phew, I did it!”

He had his picture, he had his autograph, both of which will be added to his wall of fame at home and he got his glasses back. Even with the all of the confusion and chaos (there was more), my boy really did a great job of it. We will put the Supernatural portion of our weekend in the win column!

****

Coming soon: The Walking Dead, Dr. Who and his most favorite experience of the Con…

(Our internet has been sporadic this entire week. This post was written partially on my phone and partially on my tablet – typing is difficult enough for me on either of these devices but editing is next to impossible – my apologies for any and everything I may have missed or made worse by trying to edit on my phone)

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…..

Things I have learned, things I have noticed and things that might just be in my own head

Posted by TakingItAStepAtATime

Things I have learned since DC’s seizures began:

I have learned that seizures coming out of the blue at his age is more common than I realized.

I have learned that although I have been told many times, that seizures are not life threatening, they most certainly can be.

I have learned that when seizures begin at his age, they will most likely continue for life.

I have learned that all of the testing in the world might never tell us anything.

I have learned that I will not know if the medication is working until it doesn’t.

I have learned that this is going to be a very long road.

I have learned that “calm” will never be a word used to describe me……. wait, we knew that one already.

I have learned that I can actually drive while having a panic attack, but I would not recommend it.

I have learned that even if I wake up an entire hour earlier than usual so I can take a shower before he is awake and out of bed (because I am so panicked about being in the shower and not being able to see or hear him) that he has some sort of radar that goes off to tell him that I am awake.

I have learned just how quickly I can run up the stairs any time I hear a noise.

I have learned and understand that plenty of people experience this and go on just fine. I can’t get past the fear of him hitting his head on the way down.

I have learned that nothing is predictable…. My friend’s message to me says it best:

Our years with our kids have given us the wisdom to be able to have as much of a stable daily life as possible. The routine and the predictability of our day-to-day with them is all we have to keep us from losing it. A small upside to life with our sons is that we can, to a certain extent, control what our days look like, and we come to depend on that predictability just as much as they do. We know what to expect, we plan for every behavior, we know what every sound they make means. It’s how we cope. And having this happen doesn’t just pull the rug out from under you, it unravels the whole damn rug. I just hope you get some answers and the road to getting those answers doesn’t take you through hell and back.”

Things I have never noticed until DC’s seizures began:

I have never noticed (probably because I was so used to it) that DC’s dances at times involve him throwing himself on the floor.

I have never noticed just how long it takes him to take a shower because I have never felt the need to stand right outside the door before.

I have never noticed just how many sharp edges there are on all of the furniture in the house.

I have never noticed just how many times he feels the need to go up and down the stairs every day.

Things I have come to think may be possible precursors to his seizures:

DC’s first seizure happened on a Sunday. I specifically remember telling Mrs. H on the Friday before that I thought he was heading for a crash. He had been so overly hyper, happy hyper but over the top, laughing uncontrollably and talking about things he normally doesn’t really talk about, that I was sure his allergies were due to kick in. He was like that the entire weekend.

After this last seizure, when I spoke to Mrs. H, who had picked him up from work and drove him to his camp activity, she said he was very excited about going to camp (he always is), but more excited than usual. He also gave her specific details about what he did at work and what he was going to do at camp. This is not something that usually happens. We normally have to drag information out of him and when we get answers, they are usually standard DC answers. The biggest thing was that he said, totally unprompted “Say hello to Mr. H. for me”. I know many of you do not know DC personally, but those who do, know this is not anything he would ever say. This is not his manner of speaking. *Tam, the program director at camp also informed me that DC, while always excited to go to camp seemed to be overly excited that night. He even did his entire Arts and Crafts project (he is not an Arts and Crafts kind of a guy) and then some extra.

Things that might be just in my own head (or things I may be reading too much into):

When Mrs. H mentioned “Say hello to Mr. H for me” – I remembered the only other time I had heard him say something like that and it got me thinking. We were in Disneyland Paris almost exactly a month before his first seizure. When he met Ariel in the Princess Room, he said to her, “Say hello to Prince Eric for me”. I was blown away by that and actually mentioned it in my still unfinished post “Everything is Related – The Paris Edition”. The morning after his meeting with Ariel, he slept until 11:30!!!! The one and only time he has ever slept that late was when he was sick in Florida and even then he did wake up a few times but then went back to sleep. I normally start to think there is something wrong if he sleeps until 8:00 am. Granted we were exhausted, but even exhausted, he never ever sleeps that late.

When DC started coming out of his first seizure, he make a horrible noise that sounded like he was choking. I am told that this is normal. When he had his second and *Kim described the noise as a “weird snoring sound” I remembered that night in Disney, waking up and hearing DC snoring very oddly, so oddly that I shook him to make sure he was okay. He said he was and went right back to sleep. I am wondering now if he actually had a seizure during the night and I just didn’t know. He was so tired the following day, but I just wrote if off to travel, jet lag and the exhausting day we had the day before.

I don’t think I will never know for sure.

So now do I worry each time he says or does something that before this happened would have been viewed as progress? I don’t know. I don’t know what I am supposed to be looking for.

Fortunately, so far the medication does not seem to be having any adverse effects. He has been going to bed much earlier than he ever has before but, quite honestly I really suspect – and I am not joking – that he is trying to get a break from me.

“They call me Sir DC the Braaaave”

Posted by TakingItAStepAtATime

“and history someday will rave…….”

DC had to go for blood work today. He has never had to have blood drawn before. They did take blood in the ER after his first seizure but he was so “out of it” that he did not give them a problem about it at all.

DC has always been very healthy so his doctor and I had decided to put off blood tests unless it was necessary because having blood drawn would entail making an appointment at the hospital to have him put out – an all day affair. He is big and he is strong. Even when he was younger and had to have a vaccination, I had to bring reinforcements to the Doctor’s office. Most of the time we had, his Dad, Doug, me, the assistant and the doctor in the examination room. No one could hold him, no one. It was exhausting and even with all of us trying to hold on to him, the doctor would eventually have to resort to chasing him around the room until she had a semi-good shot at sticking him. I often wondered if he ever actually got everything that was in the needle.

Well, we could put if off no longer. Due to his seizures and medications, he had to have blood drawn. He did let the paramedics put an IV in during his second ride to the hospital and he was much more alert that time. Hoping that he remembered this, I decided we would try to go to a regular lab. I talked to him and explained what they were going to do. I also explained that if he did not let them take the blood at the lab we would have to go to the hospital to have it done. He did NOT want to go to the hospital again.

He was all right until we got to the waiting room at the lab. He was in full-on anxiety mode – yelling “I do believe in fairies, I do believe in fairies, I do believe in fairies.”, jumping up, yelling and making his noises quite loudly.

We got him into the drawing room and into the chair and at this point he had calmed down enough that I really thought we would be able to do this – until he saw the needle.

Let the battle begin.

The technician called for back up and fortunately Doug had come with me as reinforcement. Still no one could hold him. It had gotten to the point where as great as the staff was, I knew they could not do this much longer. They gave it one last try with Doug actually laying across his free arm and all of us holding the “needle arm”. As soon as he saw the needle go in he stopped fighting and let them finish. Sometimes the anticipation is worse than the actual event.

He was fine. He was proud of himself. “I did it! I did it!”

When we walked out of the room all eyes were on us from the now very crowded waiting room. I am sure they wanted to see who had been causing all of that commotion. I could not care less. He did it and that was all that mattered. DC, with a wave and a smile yelled “Good-bye Ladies” as if nothing happened – and we were off.

In the car on the way to breakfast before heading to work, DC was so proud and not wanting us to forget it, began singing a song. I recognized it from when he was young, but I hadn’t heard it in years. I could not even remember where it came from:

(his name has been muted out of the video)

(A reenactment, of course)

“They call me sir DC, the brave,

and history someday will rave

I’m valiant and daring, and noble of bearing

Courageous and gallant, a mountain of talent.

No wonder folks curtsey and wave

I’m Robin, Sir DC, the brave.”

Later I asked him what movie he remembered that song is from.

The Frog Prince – the Muppet version, of course.

He was brave, very brave. I am happy he is so proud of himself. Hopefully this means that the next time might go much easier.

Now next up…. the MRI……

That should be something!

Hat Day

Posted by TakingItAStepAtATime

Today is DC’s first full day at camp. He has attended this camp since he was 5 years old. He loves it. Before he left the school system at age 21, he was able to attend 9 to 3 every day for 7 weeks each summer. Now that he has a “job”, he normally uses some of his allotted vacation time to attend for two weeks of the season. He does and has always been able to attend the twice weekly after camp program.

He attended when he was at the camp full time and still attends now after work. Because we took an extra vacation this year, he was not able to take an extra two weeks off to attend camp as he usually does, so I opted for him to go one day a week on Friday in addition to the two “after camp” sessions that do not interfere with his work schedule or his time off. This works out well because I am off from work on Fridays for the summer and I don’t have to figure out and schedule how he will get there each day.

The camp has what they call “Special Days” (more about that in an upcoming ‘Everything is Related’ post) listed on the calendar. Because of DC’s schedule he has missed one of his favorites, Hat Day (or “silly hat day” as DC likes to call it) for the past 3 years. He still has every single construction paper award that he has ever won for his hats on Hat Day and he is very proud of them.

Today happened to be Hat Day. As soon as DC discovered that he would be at camp on Hat Day, it was all that I heard about. We went through his collection of silly hats and he chose the cheeseburger hat.

We arrived at camp and he got himself situated. Although the director and assistant director are aware of his seizure, I wanted to stress again the fact that I really believed it had to do with the heat and the all-around stress of the day we had that day. I also wanted to talk to his group leader personally.

We were a bit early so the staff was still in their morning meeting. DC decided that he had to use the restroom. He came right out and informed me that there was no toilet paper.

(for someone who was so uncomfortable writing a post about toilet paper that I had to use a code word – ‘paper towels’, I do get that it is odd that I am writing a post about it again)

I got him a big handful from the ladies room and he went back in, no problem…. or so I thought. When he came out, he would not let go of the fact that there was not toilet paper in the men’s room, even though he didn’t need it any longer, it wasn’t there. I told him that I would let the director know as soon as they were finished with their meeting – but he would just not calm down about it.

When the meeting was over he came with me – still ranting – to talk to the director. First I explained to her that what was going on right then was because there is no toilet paper in the rest room. She immediately called to one of her staff to replenish the supply. This did not do a thing to calm him down. It was too late. This coupled with his normal ‘arrival anxiety’ was too much and even when I showed him the new rolls, it didn’t matter, he was too far into this now. It went on for awhile.

When he finally did calm down about that, he moved right into his normal routine of obsessing about me.

“I’m sorry, calm down now. I’m sorry. Not ‘crappy’ anymore “- (DC – speak “crabby”).

As many times that I have told him over the years that he has nothing to be sorry about (and as many times as I told him this morning), this is what happens. If we are home together, this could and has gone on for hours. If I am dropping him off somewhere, I try to just get him calm enough so that I can leave, because if I am there he will continue to perseverate on me.

I was worried and having seizure flashbacks because it was hot and now he was upset, so I was afraid to leave when I normally would have. He finally did calm down to the point where I felt comfortable leaving – not to say I feel comfortable leaving him anywhere since the seizure, but as comfortable as I can be now-a-days.

As I was leaving he moved on to obsessing about whether I was going to come back and when I was going to pick him up. This is his regular obsession – I do not know why – I have never been so much as a minute late in picking him up anywhere, ever, but it has always been a thing with him.

Now that he had moved on to “Mom is coming back”, his regular routine, I was sure it was safe to leave.

I hope his anxiety this morning does not ruin “Hat Day” for him. Fingers crossed that he comes home with that construction paper award today, because that will most certainly fix everything.

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

and later ……

Will there be cake?

Posted by TakingItAStepAtATime

DC’s father was in Florida for the winter. He left in mid-November. DC did get to see him on the day after Christmas for dinner when DC, Doug and I were in Florida on vacation.

His dad came back from Florida in May for the summer. One of DC’s first visits with his dad was on a Sunday. They went to his Aunt’s house for DC’s belated birthday party. His dad was not here for his birthday and his Aunt was ill at the time, so the party she planned to have for him right around his birthday had to be put on hold. They made up for it that Sunday though. DC was happy, he loves his birthday and nothing could be better than to be still celebrating his birthday two months later and let’s not forget the cake! Cake is very important to DC!

His father asked to take him on the following Wednesday, so DC went to his father’s house and came home in the morning in time for his transportation to take him to work. It was only a few days later on Sunday that DC had his seizure. He was supposed to go to his father’s on the following Wednesday, but we decided to cancel since it had only been a few days since the seizure and I was not comfortable letting him out of my sight.

A week later, his dad took him to his Aunt’s house again, this time to celebrate Father’s Day with the rest of his family. DC came home happily listing everything he had to eat because that is what is important. (He did ask me about “cake” before he left that morning and I told him that there may not always be a cake every time he goes to his Aunt’s house…..but yes, there was a cake 🙂 ).

When his dad returned him on that Sunday he asked if he could take him again on Wednesday. DC got frustrated and said “No! I don’t want to!”. He does this at times – he says no, without meaning to or without really listening to what he is saying “no” to. I told him not to worry, we had nothing scheduled on Wednesday and it would be fine for him to go to Dad’s. After his dad left he continued to go on about not going. I thought that he might be confused so I brought him to the calendar to show him that there was nothing going on that day. I wrote “Dad’s House” on the calendar. DC got angry and yelled “Cross Out! No!”.

From the many years spent crawling around in DC’s head trying desperately to figure things out, I had an idea about what was going on here, but I left it alone for a while. When I talked to him again a few hours later and got the same response, I decided I had to call his dad the next morning. As I said, I had an idea about what was going on but first I wanted to be sure that nothing happened, even something as small as the power going out for a split second, or the dog jumping on him, or a piece of furniture in different place, would be enough to cause this anxiety. There was nothing that he could think of.

I told him what I thought this was all about. DC hadn’t seen him in over 6 months. He was now used to not seeing his dad and only talking to him on the phone. Even before he left for Florida, he had not taken DC twice a week for many years, it was always once a week – every other Sunday and every other Monday. Now he is home and DC, with his own agenda in his head, and also quite used to not seeing Dad, feels as if Dad is “cramping his style” for lack for a better term. That, combined with his seizure and probably not wanting to sleep anywhere but home was making him a bit anxious. He loves to see his dad, don’t get me wrong, but he is used to what he is used to and it will take a little time for him to get used to something else. His dad suggested that I ask DC what day he would like to go to his house.

Later that day I did ask DC if he wanted to pick a day that he wanted to go. There was no fussing and no anxiety, it was his choice. He immediately wrote “Dad’s House” on Sunday. I told him that I would call his father to see if he was available that day. As it turned out, he wasn’t. I told DC that Dad had to work on Sunday (he didn’t, but it was easier than trying to explain “other plans”) I asked him if he wanted to make another choice. He chose Wednesday! The same day he was so adamant about not going!

Wednesday came and he was happy to go and he was still happy when he came home.

What have I taken away from all of this?

~ He needs time to get used to the fact that his father is going to be a part of his schedule again, at least until winter comes.

~ We need to make sure that DC is allowed to have some say in the matter and give him a choice of dates.

And….. you might think I am trying to be funny or making a joke, but I know my child…..

~ I am absolutely 100% certain that when I first gave him a choice and he opted for Sunday right away, it was only because he thought there would be cake……

“Arrival Anxiety”

Posted by TakingItAStepAtATime

“Arrival Anxiety” – that is what I have always called it. It is, in my mind the best way to describe it.

It does not matter where we are going or how often we have or haven’t been there – it happens. I see the change in his demeanor immediately. It happens so quickly – like walking though a door; on one side he is happy and the other side he is full of anxiety.

I always dreaded the birthday party invitation when he was little. The first half hour, sometimes more, was spent trying to calm him down. No matter how much I tried to prepare him beforehand he would scream, cry, flap and resort to very loud noises. Everyone stared and the other children would huddle with their parents because they were either afraid, nervous or both. He would, most of the time eventually calm down, but how I always dreaded our entrance.

After awhile, I realized that the mention of a party meant “cake” to DC. He was expecting cake – as soon as he arrived. He didn’t understand why he had to bowl or play games, he was only there for the food. Once I realized this, I just stopped calling these events we had to attend, parties. We were going bowling or to the play scape or to someone’s house or a picnic. Believe it or not, this helped a great deal with his “birthday arrival anxiety”, it still happened of course but it was not as severe. Afterwards when we talked about the party and whether he had fun, I would then refer to it as a party in the hopes that he would at some point realize that yes, it was a party, there was no cake at the door, but he had a good time anyway.

I remember being invited to my friend’s house for her daughter’s graduation party. Again, this was not going to be described as a party, I called it a picnic. We were there for a good while before DC saw one of the table cloths (a party table cloth). I saw his eyes widen and he signed “party” with a question on his face as if he were asking “Is THIS a PARTY??” – fortunately by that time, it was time for cake. Eventually he did begin to understand that a party meant more than just cake and our arrivals were not so traumatic.

This “arrival anxiety” continues today, of course not as bad as when he was younger but he still has an immediate change in personality, temperament and expression upon arrival to almost anywhere. You might think he is anxious about places he doesn’t want to go, or places he’s never been and yes, those are some factors, but his highest level of anxiety happens when we are going to places he loves to or has been looking forward to going.

Part of this is just anxiety, plain and simple but as with the earlier birthday issues a lot of it is about the fact that DC always has an agenda in his head. Whether or not I hear about the agenda over and over again, I know it’s there.

At the times when we are going to places he really loves, like Disney or New York City, I do hear about his agenda for quite awhile before we arrive. He’s excited all the way there and the anxiety kicks in the moment we arrive. His face changes and he begins spewing random words or phrases – “Another one, Another one” or “Froggy, Froggy, Froggy” or whatever the random word of the day might be. He gets himself so wrapped up in his head about what he wants to do and is in such a hurry to do all of it that he just can’t control himself.

Last week we went to New York City for his birthday. We park in the same parking garage every time we’re there because it is pretty much centrally located and walking distance to all of the places he wants to go. Each time, as soon as he gets out of the car he begins yelling out his random words, clenching his fists and making his loud noises. An observer would really think that he hated being there. He does this all along the route to Times Square or whatever our first stop might be. I was impressed that on our trip that weekend the “arrival anxiety” was quite minimal and he was over it by the time we left the garage. One step forward…

Yesterday afternoon I told DC that we would be going out to eat for dinner. I never mentioned where and he never asked. When we arrived at a place in town that after 21 years living here we’ve never been before (I was always under the impression that it was a bar until we received a gift certificate for dinner), DC was upset and the whole routine began and continued for an extended period of time – even after he discovered they had all of his favorites on the menu. Doug could not understand why he was reacting this way, we’ve been to new places before – often. Again, I think that when he heard we were going out, he had a few ideas in his head about where we would be going. He often has ideas about where we will be eating, usually more than one. If by chance we do not go to one of the places he had in his head, but it turns out to be a place he knows, there is no problem. Or…. if I tell him the name of a new place, there is no problem. This was not one of those times. It was not a place in his “mind file” and it was not an alternate restaurant that he knows he likes but just didn’t think of. It was new.

He did order all of his favorites (all of them) and eventually had a ‘wonderful time’ (DC-speak). I am sure he would be happy to go back again sometime.

Because I neglected to tell him that this was a place he’d never been before (my fault) , I will rate last night as only 1/2 a step back.

***** A version of this post was also posted on the Mighty – The ‘Arrival Anxiety’ That Comes With Having Autism

Everything is related – Toy Story

Posted by TakingItAStepAtATime

The second in a series of “Everything is Related” entries:

Everything is related; from an earlier post – Everything is related – Mary Poppins to New York City:

– Everything being related, many times, is the ability to relate one movie or actor to another. This has helped him to be more open to watching something that may not be Disney-based. This was not always the case, but now he can go and enjoy a movie with his friends or at an ARC activity without issue……..

–Everything being related, oftentimes just explains his love for a particular city, game, song or some of the many other things that he does or says.

–Everything being related, has, many times been used as a learning tool. “

This post is about just that…

DC as Woody and Candy as Jessie from Toy Story – Halloween

EVERYTHING IS RELATED – TOY STORY…..

Again we start at Disney. Disney, Disney, Disney anything Disney. When the first Toy Story came out way back when, I wasn’t sure DC would really go for it at all. Yes, it was Disney, but it was not the Disney he was used to. There were no princesses, no castles, no Haley Mills and most of all, no music. Of course I know that there was music, but not the “Hollywood musical” type of music – characters would not be belting out a song at the drop of a hat. DC was never a “toy” kind of kid. He never really liked or played with toys, so the toys in the movie were nothing that he would be familiar with. But, to my surprise, he loved it AND the two that came after. This boy who does not like toys actually owned a Woody, Buzz, Mr. Potato Head and a Jessie. No, he did not want to play with them, he just wanted to own them.

Tom Hanks brought him to “The Polar Express” and of course “Saving Mr. Banks” (also related to Mary Poppins).

Tim Allen…..Tim Allen….. he loves Tim Allen. That love brought him to “Jungle to Jungle”, all of the Santa Clause movies, “Christmas with the Kranks” and “Home Improvement” (yes, woo hoo, an actual TV show)…. but there is more…..

When DC was younger, transitioning into a new school was never easy, but it did seem to be easier on him than some of his other friends (and me). “School age” for Special Education here is 3-21 years of age. So there were many moves and many transitions during his time in the school system – kindergarten building to elementary, to middle school, to high school. The school handled these transitions very well. They started early with many tours of the new school, picture books with photos of the classroom and other areas of the school and a few visits (orientations) with parents. DC was always anxious about these moves but he always did rather well due to all of the work the school system and I put in to make the transitions go as smoothly as possible.

The number of children in SPED in DC’s age group seemed to be much larger that the kids moving up in previous years. This meant that the schools they were moving up to had a lot more students to accommodate at one time than ever before. We always joked that our kids always seemed to be the “test subjects” for these new or expanded programs. At times this did not go well.

When DC was in his junior year, I started looking at alternate programs for him to attend for his last two years of school. DC would walk with his class at graduation at the end of his senior year (at 18) and then either spend two more years in the high school or I could have him out-placed into a different program that focused more on getting him ready for the next phase – a work/day program and life. I already knew I did not want him in the high school for another two years and I was already leaning towards another program the next town over. Mid-senior year, the high school announced that they were creating a transition program of their own in conjunction with a local university. It would be up and running in time for our kids to start that September. The program they came up with sounded wonderful but, our kids would be the first ones through and again the “test subjects”. This worried me.

On the other hand, I was torn because it had only been over the previous couple of years that DC recognized “friends”. He had real friends. Not just the children of my adult friends, but real friends. People that HE considered friends. Friends that he did things with and wanted to do things with. DC had always gravitated more towards adults and with the exception of his friend of many years, BB, did not pay much attention to kids his age at all. I didn’t want him to lose that connection. I rationalized that “social skills” were one of his major issues and if I tried this program and really did not like it, I could always move him to the other program I was looking at earlier.

Putting this program together was a long process. Obviously there are many legal issues to address when creating this type of program. By mid-summer the other parents and I were beginning to panic that this program was not going to be up and running by September. Fortunately by August it was a go, but they had lost all of that transition time they would have had during the school year. We did get to visit a few times before the school year started and I did talk to him about it all summer. Some of my friends children have siblings that went off to college so in turn their children expected to go off to college too. DC doesn’t think like that. He doesn’t have any expectation of what should come next. He lives in the ‘now’ until the ‘now’ changes to a new ‘now’, but we were calling it ‘college’ for everyone’s benefit. “College, College, College” he was going to college. I was still worried, having missed all of that transition time.

Toy Story 3 had come out right around this time. We bought the DVD and watched it at some point during that summer. It didn’t even occur to me while we were watching it or even up to the point when DC was standing at the front door waiting for the bus on the first day of school, that he made a connection in his head with the movie…..

He turned to me and said “Mom, I am going to college, just like Andy in Toy Story”

….. and he was.

With that, everything was just fine.

I can see clearly now….

Posted by TakingItAStepAtATime

DC has worn glasses since he was 4 or 5 years old. Originally only for distance but he quickly took to wearing them all of the time.

I was a little bit apprehensive when it occurred to me that it was time to start taking him to have his eyes examined. He was not verbal at all and was not very cooperative with doctors. His pediatrician would strategically place wastepaper pails around the examining room when DC was due to come in for an appointment because he would work himself up to vomiting – everywhere – every time.

Even now, though so much more agreeable, I do still have to bring reinforcements – his Dad and Doug, when he has to have a shot The 4 of us go marching into the examination room along with a nurse and the doctor. As hard as we try, we can not hold onto this boy. The doctor really just ends up chasing him around the room in the hopes of getting a lucky shot.

I will always remember a little girl that was in DC’s Birth to 3 class. She was just a tiny little thing, with the strongest, thickest glasses I have ever seen. She, like DC was non-verbal. Even with those thick, thick glasses, the teachers had to get right up in her face so she could see them. I remember one day, walking into DC’s classroom to visit (I worked 5 minutes away and visited often) and there she was without the glasses! Her mother explained that she had changed eye doctors just recently and the new doctor had determined that she did not need glasses at all, she never did! So needless to say, I really wasn’t looking forward to having DC’s eyes examined.

Yes, he could sign the letters on the eye chart but if he was not in the mood to cooperate that day – how would we know if what he was signing was actually what he was seeing? Before we even get to that point, how could I explain to him that we wanted him to sign the letters he was being shown?

I finally thought I found a doctor that understood the situation and brought DC to his first appointment. The doctor did say that his vision was not 20/20 and he would probably need glasses eventually. It would be helpful but not 100% necessary at this time. He did suggest that I may want to do it now so he had the chance to get used to them. That is what I did.

It really did not take that long for him to get used to the glasses and his teacher reported that he was much more focused in the classroom. I must say, he is and has always been very good with his glasses. He has not lost or broken any pair he’s had over the years (knocking wood).

After a couple of years and after a few screw-ups, we switched to another doctor in the practice.
This worked out well for awhile, but eventually, after so many issues that you might think were a work of fiction if I wrote them down- we left that practice altogether and not very quietly.

The last few times DC needed a new prescription and while we were still going to the doctor mentioned above, I opted to just change the lenses in his frames. Some changes are not all that difficult for him , but when it comes to glasses, shoes or switching seasonal coats and jackets, he has a hard time. It was becoming apparent that these frames were not going to last very much longer, so it was time to find a new doctor and get new frames, whether he needed a new prescription or not.

We found a new eye doctor that came highly recommended by my brother and sister-in-law. It was just amazing how smoothly this appointment went. I did not even have to explain to the doctor that given the choice of two options, he will almost always choose the last one, just because it is the last thing he heard. We were in and out in less than an hour, where as if we had gone to his previous doctor, this exam would have taken two very long visits and then the follow up visits to correct what they had done incorrectly.

Our previous doctor had an optical shop on site. This new doctor did not, so off we went to a department store where plenty of other people I knew bought their glasses. We started the process of trying on different frames. As expected, DC was anxious. He yelled “No!” to each and every pair that he tried on. Now it is never really clear if he just does not like the frames or if he is saying “no” because the sample frames just have regular glass in them and he can’t see. I have tried to explain this to him many times, but I am really not sure that he understands.

I do not know if he was just tired of trying on frames or if he actually liked the pair that he had on his face at that moment, but he finally said “Yes”! The girl who was helping us was so very excited – “He said ‘yes’!” . Once she said that out loud, he went back to “No”. I had a “yes” for a minute, I wasn’t going to let it go that easily. I asked him to look in the mirror. He did. A customer that must have been listening to this whole exchange (how could one miss it?) told him that he looked very handsome in those glasses. He was sold.

We sat down to place our order. At this point DC had enough and it was time for a panicked sprint to the restroom with me running behind yelling for him to slow down, as he raced to the other end of the store. He does this when he becomes overwhelmed. It is also his way of trying to get out of doing something he doesn’t want to do. I assumed I was in for the long haul as much of my life is spent standing outside the men’s room or yelling into the men’s room. To my surprise, he calmed down relatively quickly for him, but I am certain the girl waiting to finish our order was probably thinking we had skipped out on her. We finally made it back to complete the order and were told his glasses would be ready in less than a week.

I got the call 4 days later that his glasses were ready to be picked up. I didn’t want to wait until the weekend to go as his glasses were on their last legs, so I asked Mrs. H to take him after he got home from his program.

I was home from work by the time they arrived home. DC walked in wearing his old glasses carrying the new glasses in the case. He didn’t realize that now that he had the new glasses, he was actually supposed to wear them. I don’t really know what he thought he was supposed to do with them, but wearing them was not on the list.

Old wire frames

I asked to see them. I asked him to put them on and explained to him that his old glasses were ready to fall apart and he should start wearing the new ones. He put them on and I put his old glasses in the case and stored them away just in case we ever needed a temporary pair. He was fine for a little while, but later came into the kitchen looking around very determined to find something. I asked what he was looking for and he replied “Glasses”. He was looking for his old glasses. He still did not understand that he was supposed to be wearing the new ones.

I really was beginning to think that this was going to be more difficult than I originally thought. I explained again that his old glasses were going to fall apart and this is why I bought him new glasses. He has to wear the new ones. He should be able to see much better wearing the new pair too.

Just like that, he left the kitchen and never asked for the old glasses again. I was impressed. This had to be the easiest transition to anything we’ve ever experienced.

First he chose frames that were dramatically different from the old frames and then after only an hour or two, let the old pair go and never looked back.