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.

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."

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”. 

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?

First baseball practice

So one of the support groups I belong to has decided to create a summer activity for our kids but with the help of a councilman, she has received some funding to make it a citywide event for any and all special needs children between the ages of 3 to 21 years to join. Registration was two weeks ago and I saw about 20-30 children were signed up. Practices are scheduled for late June, but there was discussion about making two practice teams, one for those who live on the North side of the city and one for those on the South side. So to get feedback and a division of children and families, there was a quick meeting Wednesday evening at the park not too far from our subdivision.

Batter up! 

I picked up Puppy from after school care and hurried over to the park. There were already about 15 kids there and one coach.  They had set up and were practicing batting and running. Of course we get there and Puppy is all about not wanting to do anything, just sit on the bench and watch. He was complaining about the heat and too many people being there. Shortly thereafter the kids came off the field to take a water break. At this time I talk to him asking him to go give it a try so he can tell his teacher about it the next day. He finally gives in and goes to try batting, and he did great, ran to first and the rest went equally well and smoothly.

    

Puppy makes it to First base.

Second base

Third base...

       

and he makes it home.
Way to go Puppy!

When he was back at the bench he started to get fussy and asking if Ms. H would be coming to meet us at the park. I'm guessing he wanted someone else to see him play to make it valid. I said yes, and all of the sudden he says he can't stand her and doesn't want her there. Don't worry it's not the first time he does this, but it's one of the few times he does it in public. She gets there and he comes close and tells me to ask her to leave and that he's going to have a tantrum if she gets near him. I can't help but roll my eyes because I know this is already escalating into something bigger. Sure enough, he tries to bang his head on the fencing unknowingly that cyclone fencing basically bounces back, so he was disappointed. I looked at him and he started mumbling bad words...and I said, "Let's go."

When he was back at the bench he started to get fussy and asking if Ms. H would be going to meet us at the park. I'm guessing he wanted someone else to see him play to make it valid. I said yes, and all of the sudden he says he can't stand her and doesn't want her there. Don't worry it's not the first time he does this, but it's one of the few times he does it in public. She gets there and he comes close and tells me to ask her to leave and that he's going to have a tantrum if she gets near him. I can't help but roll my eyes because I know this is already escalating into something bigger. Sure enough, he tries to bang his head on the fencing unknowingly that cyclone fencing basically bounces back, so he was disappointed. I looked at him and he started mumbling bad words...and I said, "Let's go."

The entire walk to the truck was just so peachy with him screaming foul language in Spanish. Luckily, no one paid any attention because each parent had their own hands full watching over their own child. Ms. H followed us to the parking lot and we headed home. On route he was still screaming that he didn't want Ms. H to go to our house. The bad words were so colorful with him taking turns in English and Spanish. Then he mentioned he was repeating words another ex-classmate usually says. So I called him by that child's name and he was furious. So now he's banging his fist on the door window, on the dashboard, on the arm rest, and finally it ends with him biting his hand. However, it must have been a really strong bite because he started to cry and yelled it hurt. Keep in mind he has braces and it only makes it easier for him to break skin.

We had made it home. Once he was a little calmer, he looked at me and apologized. He wanted sympathy for his injury. He leaned his head on my shoulder and said he was nervous. What would his teacher say when she sees his hand? What will his consequences be tomorrow? So much goes through his mind in such a short period. I can't imagine the mental struggles he must go through all day.

Of course he then started up again once we got inside the house because Ms. H was now with us. But he just stormed up to his room, closed the door and stayed there talking to himself. This lasted about 30 minutes, but only because I decided to open the door to check on him.  He had been pacing back and forth, nothing more, but he was nervous and he was about to start escalating again. We sat down together and I tried my best to explain that we can't change the past (he doesn't understand past though), so move forward and don't repeat the biting and swearing. He was probably just satisfied with the fact that I did not express anger. Maybe I should have, but everyday teaches me and reminds me that he mimics and he would indeed mimic my anger if he saw it, maybe not today but someday. He politely gave me a kiss on the cheek and started making his way to the shower and began his evening routines, then a sweet "Good night, Ms. H., I love you." and "Good night, mom, I love you."  Another day is now behind us.

April 2 is World Autism Awareness Day!

April 2 is World Autism Awareness Day!  Are you lighting it up blue?

If I ever learn how to post pictures, I'll post them of my blue lights.

Sorry for not posting much these days, but I feel like I've been going in circles day in, and day out. We are still trying to wrap around this new after school routine. Puppy seems to like it as a whole. And if it weren't for all the driving, I think I like it, too.

I had a post started last week on the driving - driving me crazy, but the thought of repeating the events just gave me a headache. So I may or may not finish it. Only time will tell.  But because we have plans tonight to light up the grounds at our city's civic center, this is all you get today.  More to come soon, promise.

Instincts

I read something interesting today that I wanted to share.

-- Phil Schwarz, Vice-President,
Asperger's Association of New England wrote about ABA teaching methodologies:

"These teaching methodologies work beautifully for some autistic kids, to teach them to learn how to learn. They do so precisely because they leverage the children's specifically autistic strengths:  good memory, attention to detail, attention to patterns and to the continuation and breakage of patterns. They also break cognitive steps down into units that can be tuned to match the children's cognitive and sensory bandwidth and attention span -- both at the outset and as they increase over time."  Please look him up if you want to see his "defense" for ABA teachings.

I only wanted to post the definition he wrote because it brought me to a place where I am further understanding my son and his lack of instinct.  I already know that our days are consumed with teaching, "teaching him how to learn."

But what happens when he "learns" poor behaviors from his peers then finds it difficult to understand why his mom keeps telling him not to do it?  Someone else did it, why can't he do the same?  Puppy has no instinct to know much of what is right and what is wrong until he learns about it, and usually the hard way.

Also, he doesn't usually show interest to play with the other kids.  Mostly it's because unless he is taught to catch and throw a ball, basketball, baseball, etc., it's all Greek to him.  I sometimes forget to remember this small factor myself.  I hope that now since I wrote about it, I'll be more alert and not so quick to correct him for the chance that he did not know.

Day One

Seems strange to call it "Day One" since it's been over eight years, but I'm new to blogging and thought I'd give it a try.

I choose to write about the events in my life that specifically surround my son, Puppy. No, it's not his real name but rather a nickname we call each other. He called me that one day and when I asked him why...he said it was because he liked puppies and how they are soft to the touch and he liked to hug them, so we became Puppy for each other.

Puppy is a beautiful twelve (12) year old boy with autism. Our lives may seem a little different from others because autism is a large part of our everyday routines. And for the record, autism does not define my son, but hopefully it will explain what I write about. So with this said, I am blogging to write about some of those events as they happen. You don't have to comment, but I would like to hear feedback. I hope you enjoy the reading.

And I will now post my first blog with hope of many more to follow.