Autism Support Groups

As a parent of a child with autism, do you participate or belong to an autism support group? You can easily find groups on facebook, the Internet, or maybe from you local school district. 

I can remember the years I thought I could handle being an autism mom all by myself. But my days and nights were long. There was a lot of loneliness. Feelings of depression and anger. Thoughts of uselessness. There were also the days when I thought I was the strongest person at handling Puppy all by myself. 

But, what about me? What about me? No one ever asked how I dealt with Puppy and autism on a daily basis. I'd hear comments like, you are stronger than me, I could never raise a child with autism, he's just spoiled, stop with the time out and spank him, he's an angel and so are you, you're doing great, and keep up the good work. Those are the most common remarks and they are just too many more to remember right now. Mostly the comments were giving me a reason to be stay away, stay alone. Keeping my distance from family and friends must have made everyone think that everything was just fine and dandy. But it never was. There was never "me" time. It is all about Puppy, 24/7. No one really wants to hear how you are doing. No one really wants to know how you do it from day to day. No really wants to hear your needs and wants. 

I was wrong. One day a flier came home in Puppy's backpack. It was a support group for autism. Huh? What does that even mean, I thought. I wasn't sure but I was curious. This came years after learning that Puppy had autism. And suddenly from nowhere they were there, support. My confusion was that I expected it was an out of the school district learning center for Puppy. I wasn't going to let a chance get passed us without first checking it out. 

So we anxiously arrived to the meeting on a Wednesday at 6:30 in the evening. We were greeted with smiles and shown into a room with about 8 other parents and some kids. Some parents were there alone. Hmm? I thought it was probably a gathering to find out how many participants they could find to attend this support center for our kids. Nope, I was wrong. A person stood up in front of the room and started talking. She was also an autism mom, and welcomed the families. She asked us to introduce ourselves and our child. After that she said, "I see some new faces. We are going to continue going around the room one at a time and tell us, how are you doing?" I didn't understand the question. I thought she was asking for information on how our kids are doing in school. But the first parent started speaking and I heard story after story about the daily lives of the families present. There was some head nodding and uh-huh's from other parents...and from ME! It hit me. I can speak about ME! Someone wants to know how I am doing. I felt great relief, comfort. I felt a weight lifted off my shoulders. And every other parent in the room knew exactly what I meant and what I was going through. And I knew what they were going through as well. There was this strange unity in the room. I hadn't felt that before. 

Autism parents, brothers, sisters, uncles, aunts, cousins, grandparents, anyone...please find some time to attend an autism support group meeting in your area or join a group if even only on facebook or over the Internet. 

I also understood how to have a greater connection with Puppy's teachers and aides throughout the years. They were there all the time, I just never reached out to them for support. My distance kept me silent and alone. But not anymore. Help in the form of shared experiences was my new comfort. I slowly visited several local autism support groups and found the one that was right for me. I still go back to the other groups now and then, and keep friends with some of the parents from each of the groups. 

Support is defined to give assistance. Different types of assistance come from a support group. As I attended more meetings, I was better informed as a parent, because some of our meeting included visitors or speakers, and introductions to therapy providers. I found out about programs for the disabled. Programs that I needed to sign up Puppy for to be on a waiting list for aid into adulthood. I found out about centers for self-help skills after high school. Respite and in-home training were also introduced to me. All this information was exactly what I needed and I didn't have to look for it, it came to me at my support group meeting. I wonder now if I would have learned about some of these programs if I had not joined a support group.

So now, I was able to accept my challenges knowing I was not alone anymore. I wasn't the only one going through the headaches or Puppy's behaviors. Now I knew that much more about how to share; and with sharing came experiences from new friends and families and I, myself was sharing my life and my life with Puppy.

Implusive Behavior

Has your child ever done something...out of simple impulse? I bet the answer is, "yes, everyday". Why do you think they did it? They did because it's an autism related characteristic just like echolalia or stimming, as well as being an ADHD behavior.

And what is an implusive act?

Impulsivity (or impulsiveness) is a multifactorial construct that involves a tendency to act on a whim, displaying behavior characterized by little or no forethought, reflection, or consideration of the consequences.

I touch on this today because I was imagining myself as a young child doing impulsive acts and getting in trouble. Of course I was always reminded, "you know better."  But does a child with autism "know better"? 

I can tell my son, "don't do that, you know better." But Puppy will probably it again, and again. There is no thought going into the action or behavior. And I'm going to say that Puppy definitely is not thinking about the consequences.

I'm including a link to a webpage I found that gives excellent examples and definitions of impulsive behaviors in children, any child.

The Child with Attention Problems - Impulsive Behaviours

Lets' give our kids the benefit of the doubt that there may not have been any specific reason for their impulsive behavior and remember this when handing out consequences.

However, as parents we need to teach, teach and teach with patience, there may be consequences.

Shattered thoughts

Shattered were my thoughts from yesterday's blog. I guess I spoke too soon and jinxed things.

It started with the morning routine going fine, until I waved good-bye to him as he left on the school bus; came to pick up dishes at the kitchen, and noticed he had not taken his medications.

I called the teacher to make her aware of this and to please watch for any unusual mood swings. I kept my phone close all day. Whew! No calls from school. Turns out he seems to have done well both at school and at daycare.

I suppose he was just waiting for me. Waiting to be himself and waiting to show his true colors at home. Yes, I'm more than certain other parents know what I'm talking about. Puppy comes home after a pleasant drive and, bam! He walks in the door and those mood swings I was hoping to avoid came pouring out.

Puppy was upset. I don't know what triggered this anger. He really didn't give me much notice. But it was here and loud. Puppy was angry and his first outlet is cussing. I see him and he looks like a lion with his chest out and shoulders back and the look on his face is not one I like. I do worry, but my worries are not the same as other times. I am fully aware of how this dance is going to go. He is mimicking what he's seen and this anger is not an actual emotion he is experiencing. I know this is not easy to follow, but stay with me.

My guess is Puppy is home and already bored. So his mind begins to wonder. He sees the computer station in the hallway and is angered that I have put a password on it that prevents him from using it. And if you are reading between the lines, I had to do this to keep him from searching websites he should not be watching. He discovered that he can type a word by sounding it out and Google will correct his spelling. Wow!

Puppy has even learned how to search Google on my iPhone. But even more surprising, he has learned how to delete his searches. Yep, he's very observant. He saw me clear it only once.

And the moments go by with him screaming and hitting his head and punching a wall (no hole this time) and the only thing that angers him more is me ignoring him. But this is also the only thing that makes him calm down enough to regain my attention. His apologies follow and he is calm without any serious injury. My patience has paid off. Our evening is back to quiet and pleasant. I can get used to this. And even though this calmness is not always here, it is here enough to enjoy each other's company. Gotta love Puppy. He's unique, he's Puppy.

A good day all day

Ah yes. It’s amazing how some days are like day and night. After the stress from Tuesday’s events, Puppy woke up on Wednesday with a smile on his face and his squeaks. That’s the only way I know he’s not grumpy. A squeak in the morning is music to my ears. After getting dressed for school he came down for breakfast and asked if he was in trouble and if his teacher was going to be angry. I wish there was a magic pill he could take to wipe away his bad experiences and only keep the good ones. I did my best to explain that he already had his consequences and that he was starting a new day. He took a deep breath and said he was done misbehaving.

He had his final day at middle school and celebrated with pizza and cake.  It was a good day all day. Morning, afternoon and evening seemed to go by without a hitch. He was well behaved, helpful with laundry, did well during his therapy session. He showered before bedtime, and all was followed by the sound of silence.

Although I know that he probably thinks he’s being sincere with his apologies, this is all a part of autism. We've been down this road before and he can go days without a tantrum or cuss word, but I cannot forget that there are constant triggers that even he is unaware of which will take him to another place. It may be that he safely goes on a verbal tantrum; but it’s a possibility that he might be looking to have a more physical connection such as picking up buds or an empty box of cigarettes from the floor. I just hope he keeps safe without hurting himself. 

The threat

Tuesday evening was not so smooth. Puppy had done great through his speech therapy with Joe.  After their session they went over the rules that come along with keeping his wallet in his pocket.  I had explained earlier to Joe that the wallet was beginning to have less value to Puppy, and we were going to need another way to get his attention. Well, I wasn't expecting what he said next. He explained that the next time he had a tantrum or misbehaved, he would be coming over to shave off his mustache. And so it was said out loud.  Puppy continued to say everything Joe wanted to hear and their session was over.

It almost seemed as if Puppy waited for Joe to turn the corner and out of sight before he came to me and tells me he found an empty box of cigarettes on the sidewalk and has no intentions of throwing it away. We talked it out and I was not successful. Puppy’s anxiety was escalating and I saw the signs.  I sent Joe a text to please come back.  I waited outside for Joe as Puppy ran upstairs and running around as if looking for a hiding place for both the box and his wallet. And then he waited at the door for Joe.

Once he set eyes on Joe he started cussing and throwing punches at him. Thankfully, Joe is a professional whom has years of experience in handling these same situations and he quickly took control of Puppy and restrained him as he talked him into a calm state. Then the process of following through with the threat was placed into motion. Although Puppy cried a bit, he remained under control and his mustache was shaved off. He apologized and said he knew he did several things that were against the rules and that he was not going to do them again.

Ups and Downs

We are still hanging on. On to what? I don't know...my sanity, hope, heart maybe.

The last month has been rather difficult. I can't put my finger on it, so I can't fix it, or help it to be better.

Since the last time I wrote, we now have four new holes in the walls of our home. Two smoke detectors are hanging from wires on the ceilings. The tantrums are here and don't appear to be minimizing.

Actually, I think because we are trying something differently, Puppy may be expressing his dislike to the change.

I'll try to get back on here to blog about these changes. Wish us luck.

Picking up off the floor

Yup, he did it again. Puppy had asked to go across the street to keep the old man company while he worked on his truck. I get so tired of arguing with him that I allowed for a five minute visit and no longer. It seems that five minutes was just long enough for him to search his surroundings and find exactly what he was looking for...cigarettes. But these were not just any cigarettes, they were those metal ones that come in screw parts to make one, probably for persons either trying to quit or wanting to smoke indoors while avoiding the smoke, I don't know.

So he had them in his pockets for about one hour on Monday. He could no longer keep the secret to himself and came to tell me, "Mom, can I talk to you?" I always worry what surprise is going to follow this question. He's a bright kid and begins to explain that they are not real cigarettes and that the man gave them to him. And this smart child makes sure he keeps them hidden in his room while revealing this information to avoid me taking them from him. I convince him that I have no clue what he's talking about and would like to see them. He brings them to me and of course I give him a speech I've repeated so many times before. I clearly see he's not handing them over, they are now his prized possessions. Remember that he is observant and mimics everything, so ripping them out of his hand or screaming and shouting are not the way to go here. I coach him to give them up without success. So our evening routine continues and he is finally in bed.

Tuesday morning he rises with energy and has at least taken my advice not to take them to school. He knows that unwanted behavior will remove him from the classroom on Thursday while they have their Christmas party.  While having breakfast we discuss all the negatives about the cigarettes and by some miracle he decides to comply and he throws the cigarettes in the kitchen trashcan right before the bus arrives to take him to school. What a huge relief it was for me. The sweet smell of success is actually a dirty stinky one.

Knowing my son like I do; I waited for him to leave and went to retrieve them from the trashcan. Their smell is strong and I put them in a plastic zipper bag. I take them with me with the intentions of throwing them away, but not before I take a picture...just for you guys. :)

He had taken off the wrap of one so that it wouldn't look like a cigarette, he thinks things through sometimes.

Now to continue about how well I know my son. We come home last night and he's pacing around the kitchen. Instead of going upstairs to change, I suspect he's up to no good, and I begin washing dishes. Puppy starts to get anxious and even asks me why I'm not going upstairs. Since I'm not leaving he decides to be the most helpful child and asks if he can throw out the trash for me, and of course I let him. I gave him a few minutes and when he didn't return I went to find him emptying the contents on the driveway next to the outdoor trashcan. He's usually nervous when doing mischievous acts and is constantly looking around for someone to see who is watching him. After a minute Puppy saw me standing there. He started cussing like a sailor and told me to "get the f*** out of here" and some other pretty words. I assured him I wasn't going anywhere and was going to wait until he cleaned up all his mess. Puppy continued to empty and search the contents of the bag until it was empty. He was getting even more angrier and confused.  It was escalating and we were outdoors for the whole neighborhood to hear his screaming echos, just perfectly. I saw how determined he was to find them and was prepared to throw out all the contents of the large outdoor trashcan to find them. I told him he didn't find them because I had taken them out and threw them at a convenient store trashcan. I could see he was angry, but glad he didn't have to dig anymore. He gave me a few more selective words and we came inside to clean up. He cried and sought comfort and sympathy because his plan and his needs were not met. I hugged him and consoled him all the time asking him to jump in the shower and wash off all the germs from the trash. It only took about 30 minutes this time and he was showering. The entire evening went by with only a couple of soft hits to the walls with his head. Threats really, but no major tantrums, yea!

So what happened next? He switched his attention to his biceps. And again, after a lengthy talk about muscles he finally marched himself upstairs to bed. I was so tired after all the drama, that I actually slept like a baby.

A Bad Day...

I heard this today and I thought to myself, if there was a simple way to express living with autism...this might be it.

"A bad day is a bad day; a good day is just a bad day waiting to happen."

I hope that when you read this you don't feel I'm being negative. I simply live with a teenager with autism. Everyday is different and yet the same. One word, one object moved, or just one look can and may bring Puppy into a state of anger.

I use repetition in reminding Puppy that he is in control of his tantrums (and meltdowns) and that he is the only person that can make himself feel better.

Whenever sparked to anger, he tells me his head hurts or that he's hot or has a temperature. This anger may lead up to a tantrum and I'm glad he's becoming aware of his own body changes and may even try to prevent tantrums.

Of course, recognizing the warning signs doesn't always work. If Puppy says he's hot and I say he's not...I take a step back--because here we go again. Will he or won't he escalate into a tantrum simply because I have not given him the answer he wanted to hear? Honestly, my answer to this question has repeatedly been, "A little warm". As quickly as possible, I then redirect him to drink a cold glass of milk or water and the moment is reduced to a calmer Puppy with him saying, "See, I feel better now...that's all I needed." Oh how I wish this was the result every time, but it isn't.

"A bad day is a bad day; a good day is just a bad day waiting to happen."

Damn Obsessions (Final)

Okay, I dragged it out and for some reason I'm not making time to finish this story off.  I'm going to cut to the chase and ignore the details. Here we go.

Puppy went next door in the evening of the 8th to play with the kids since they were in the backyard. The family was cooking out and let him in. There were a few family guests there and all seemed to be going well. I had told Puppy to come home early because he wasn't invited for the cookout and to my surprise he complied and was home around 7 P.M. Then he asked if he could go to his room and rest then shower. I wasn't going to disagree and so the evening ended on a good note.

The next morning he was up at his usual 7 A.M. and dressed. He wanted to go outdoors but isn't allowed to unless I'm watching him. When a few hours went by and we had gone through our morning routines, he comes inside and sits across from me.  He says he has to tell me something and is looking at my face for an expression. I see his eyes moving back and forth as if taking a hundred pictures. I try to make my expressions as exaggerated as possible so he can tell the difference, and he's caught on pretty well. So first of all I'm as calm as can be to make sure he confides in me. Then he hits me with the information that he has another box of cigarettes. He's been picking them off the ground for years. He asks if I want to see it and hands it to me with a grip on it so I need to pull it from him. He quickly says it's his and wants it back. Surprise! THIS box has eleven cigarettes in it!! I can only imagine he swiped it off a table at the neighbor's the night before.

I talked to him about right and wrong and very wrong and super duper wrong. I may as well been talking to the wall because he just kept shaking his head and asking for the box back because they were his, in his eyes. I hid the box during his pacing back and forth and managed to keep it away from him permanently.

My son, the cigarette snatcher, picker upper. This damn obsession is so strong and overwhelming to him. I wish there was an on and off switch. I am open for any advice.

Damn Obsessions (Continued)

So on this Saturday morning of the 8^th, I am having breakfast around 8 A.M. because that’s as early as I was able to drag myself out of bed. Puppy had already fixed himself waffles and milk and was ready to head out the door to observe any neighbor smoking that comes out of their house first. I figured something was up, so sure enough he had run out of paper to use as rolled up cigarettes, so he had gone through my purse and taken four dollars, had rolled them up and taped them as substitutes. But I didn’t find these until later that morning. So let’s just say he was a happy camper because he was getting his imaginary fix on cigarettes.

In one of his check-ups on me, I was able to have him help me with laundry chores, so the entire morning wasn’t lost. However, we had an invitation from Ms. H to attend her son’s birthday party at Chuck E. Cheese at noon. Let’s just say the morning flew by and we were at the party. The only problem is that Puppy has been complaining of chest pains for a few days this week so I figured I better have him checked. With Puppy, it could be anything. It’s not easy to know because he doesn’t have the vocabulary to describe his pain or location very well. He’s been going through so many issues these days that I was thinking it was just anxiety or nerves because it usually comes around the time he’s stressed about something he did. He was looked over by a doctor at a clinic and he guessed it may be heartburn because test results were normal. We picked up our prescription for Zantac and went home.

Boy, this story is really going to drag out since I’m writing early in the morning and not having enough time. Once again, to be continued.

Damn Obsessions

Yea, I am cussing. I am just so damned tired. I've learned to hide so much that if it weren't for prescription drugs...I'd definitely would have lost it so many times. It's almost like being in a relationship that's so demanding and sometimes overwhelming that you feel if you talk or share with others, you are complaining and no one wants to be around a complainer or whiner. So we, I, hide it and keep to myself.

If it weren't for blogging I may have been worse off. I can vent or share in my blog. Well, this weekend was one of those weekends that was with great strain on us. Puppy started Friday evening with some debating. I picked him up from daycare and we visited with my parents for a while. But he was eager to get home. Puppy had his wallet removed from him at school the week before around Wednesday; and since then he was carrying his extra credit cards in his pocket to school. For lack of concentration, he had those taken away as well during the week. So when he finally got the wallet back, he had no cards to put in it. I had an ARD on Friday and the teacher returned the cards to me explaining how it all came to be that he had them taken away. So now I returned cards to him and he wanted to get home to fill his wallet which he had purposely left at home so that it wouldn't be taken away at school again.

But it didn't stop there. Cigarettes were on his mind as well. He was nagging all the way home for me to stop at the Dollar General store so that he could buy toy cigarettes, as if. So driving by passed the store caused only more of a tantrum with him punching the truck window and dashboard. Not the first time, so it goes on for about a half mile and we make it home without damage to the truck or him.

His Saturday morning just picked up where it left off the night before only it was now 7 A.M.


Sorry readers, I just saw the clock and I'll make myself late for work if I don't get moving. This will definitely be continued, hopefully tonight. I have so many parts to the story to write about that I don't want to cut to the chase and end it. Stay tuned for more.

Boys and biceps

I am skipping on my list and jumping to Number 10 to discuss Puppy and his biceps.  I actually wrote this on November 10 in my journal during my without-Internet-days and thought I might share.

It's Saturday and today's already been a "wow" day.  Puppy is obsessing with his biceps. I can only imagine he has seen someone, maybe his coach or someone else whom has large biceps. He's so observant and of course he mimics what he sees. Today and most of this past week it has been muscles and biceps.  I got a few pictures of him doing just that, too. The only way to keep him from putting a rubber band around his upper-arm is to find another solution.

Well, I came up with putting scotch tape on the fatty part of the arm to emphasize the bicep.  It did the trick for him but I'm also hoping that the pain from removing the tape will leave a lasting impression...enough to not want to do it again.

Puppy seems to find it difficult to accept my advice because I'm "a girl".  It might be my own fault. I've used this excuse before whenever I wanted to avoid a subject or discussion.  This smart child has learned to turn things around an throw it back at me, ha ha.

Anyway, he's calm and liking his bicep (only the right arm) and has gone outdoors to show off his arm to Cody.

I found some pictures of the first days when he was crumbling paper balls and putting them under his sleeves, and of the the tape on his arms.






How can you stop him from doing something like this when you see that smile?

 

My List

Oh how I miss blogging. So much has happened since my last posting that I don't know where to start. Maybe if I list them I can get a handle on my thoughts and run through them and I might even place some on hold for later posts.

1. I had my Internet disconnected.
2. Our washer is still broken.
3. I had to replace my a/c unit.
4. Puppy and I are back home and sleeping in our own beds.
5. I'm busier than ever at work with new duties.
6. I paid off my truck!
7. Puppy keeps pulling out his wires and the brackets on his braces. I got scolded by the orthodontist.
8. Puppy still wants to make boxes with rolled up papers in them.
9. My brother passed away.
10. Puppy is still obsessed with wallets and adding muscle growth to his obsession list.

That's enough to overwhelm anyone. And not having Internet to blog and vent is killing me.

Well, I should be getting my Internet restored on the November 17, so mark your calendars, I'll be back and hopefully with more energy to write.

Thanks for hanging around and waiting on me.

Handle with care

It looks like we may be hanging out at my sister’s for a few more days. I just got the quote for the new unit I need to purchase…ugh! So with that said, it means more cold cereal breakfasts and dinners, yummy. It’s not bothering Puppy though. He was next door on Monday and came back to ask for permission to go to Whataburger with his cousins, so I gave him money and sent him to have a warm meal with some good company. He came back with a full stomach and happy, and was ready to comply with instructions for shower time followed by bedtime.

My little boy is growing up.  I love when he wants to go places, without me. I don’t mean it in a bad way; I just didn’t think I would be letting him go anywhere alone on account of him having so many mood swings. I worry for him and also the person(s) he’s with.  How would they handle a tantrum or meltdown? Would it be so terrible and unfamiliar to others that they may call the police? So many questions run through my mind at all hours of the day; mostly when he’s away from me.  But, I need to let him grow up and I realize the importance of giving him independence.  I just wish I could put a sign on him that says “handle with care”. 

Back to a routine, sort of...

The new school year has begun and we were both more than ready to get going. I was more than eager to get Puppy back into a routine, but mostly back to a structured classroom setting and the reminder of rules.

But as I'm sure you know, sometimes life throws some bumps on the road. Our air conditioning has been out for two weeks now. We are fortunate to be able to camp out at my sister's home, with A/C, DirecTV, and a washer and dryer. Did I mention my washer has been broken for almost three months now? Probably not since I hadn't been blogging.

But these little bumps on the road have sort of gotten me into a blah state of mind and I have only been able to focus on the present. I try to take it one day at a time and don't expect much so I won't be disappointed. The setbacks on with the A/C have been unpredictable and I just want to go home. As for Puppy, he mentioned he misses home, but he's liking the fact that he goes next door to play with his cousins in the evenings. It's not easy keeping an only child entertained at home.

Speaking of, I better go pick him up from daycare.

Wordless Wednesday (2)

Puppy's self injury, again

After cleaning the wound

Puppy opened door with enough force to crack the doorknob stop

I've been away

I know it's been a while since my last posting, and I apologize. I'm not even sure I know what happened that made me stop writing. I do know it wasn't one specific reason, but rather several things were going on at home and at work that simply created this overwhelming feeling within that made me take a few steps back and get myself reorganized, clear my thoughts, evaluate the present, and take hold of the roller coaster ride Puppy has been on and focus on "us" (Puppy and me).

I will admit that I missed writing. It serves as therapy for me to vent and to think through some of the experiences I write about. In fact, funny thing happened this weekend; my support group manager handed out composition notebooks to all the parents present. She and I had spoken earlier in the week and she noticed how I was unloading some of my worries and concerns on her and vice versa. So she asked for us to try keeping a journal by writing anything and everything we wanted, it could be private or to be shared at the next monthly meeting. I thought to myself, I already do this but having the notebook handy I did begin writing. I'm even thinking it might help me keep tabs on subjects or events that happen for posting whenever I can get to a computer. Like I said, I hope I can stop the roller coaster ride and maybe find a ride that takes us on a slow moving boat, calming all senses as we coast along on the river for a few miles turning into days and weeks. I can dream, can't I?

Wordless Wednesday (1)

I’ve read several blogs and have seen this before; I just hadn’t done it myself. I decided to do my first “Wordless Wednesday.” I think the pictures speak for themselves and the rough days Puppy and I, and Ms. H have been going through for about three weeks.