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.

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?

Special Olympics 2012, Day One

This year’s Special Olympics has come and gone.

The two day event went a little differently this year. For starters, it was the first year I didn’t get time off from work to watch the competitions. Puppy wasn’t too happy about that and even voiced that he didn’t want to participate, in his words, “I don’t want to go outside today.” I was hoping that after his morning call to my sister on Wednesday, he would get his pep talk and be convinced to get on the bus, go to school and change into his uniform for the events. Luckily, it pretty much happened that way. His teacher wasn’t going to let him sulk or stay in the classroom alone while they all went to the field.

On the first day of the Special Olympics, he did fine at the 50 meter run. In pictures that were taken by another classmate's mom, I see he was grouped with 4 other kids, him being the tallest and biggest. I think those little runners had an advantage over him…just saying. He didn’t place and came in 4^th or 5^th. 

It was it long day in the sun for Puppy though. His after school routine was changed, too. He was dropped off at my parents’ house after school. My sister was there and asked if I would like her to take him with her to my brother and his wife’s house until I got out from work so I wouldn’t have to deviate further from my route home. I got there and he greeted me like he usually does. He was excited to tell me about his day at the Olympics and how he ran as fast as he could to get his ribbon.

I sat down on the sofa to visit with my sister, my nephews and niece. Puppy on the other hand, was ready to go home. When I told him we’d leave in a while he didn’t like it, but waited. My brother got there, then my sister-in-law, and so I was catching up with them as well. By now Puppy was even more bored and asking to leave again. My sister-in-law asked us to stay for supper, but still…Puppy wanted to leave. When I said to him we’d leave after we ate, he took a deep breath and walked to another room and screamed he was going to bit himself if we didn’t leave. I told him soon, let’s eat first. And he took his hand to mouth and bit down as hard as he could. His braces left a terrible mark and open wounds on the backside of his right-hand. He started yelling, “I bit myself hard!” “It hurts!” I went and found him sitting on the bed crying with his hand in the air. Puppy’s first response was he’s sorry. He knew it wasn’t good behavior and figured I’d be angry. I was, but it was done. My instinct is to comfort him. It may not be the right thing because generally it was giving him attention. But as I saw it, my attention did not reward him and we were not leaving. Instead, I did comfort and his wound was cared for with ointment and a band-aid; and we walked to the kitchen to eat.

I read his face and saw embarrassment. But he tried to make small talk with others just the same. By this time Ms. H had arrived to meet with us for the evening. He sought her undivided attention for a while before asking to go outdoors. He was fine for the remainder of the evening. This was the end of day one.

What caused his tantrum? I will never know. I can take guesses. I can speculate. But Puppy has autism and can’t tell me himself why he turned to self-injury. Something triggered it, but looking for attention was not it, because attention does not take him to another location like he wanted. He wanted to go home and probably wanted some of this day to have routine to it and ultimately…none of this day was familiar or routine to him.

Puppy is doing well now and looks down at his hand. “Why did I do this, mom?” I don’t have an answer.

New After School Care

So how is everyone doing? Whenever someone asks me how I'm doing, I am programmed to say, good or fine. It's rarely true though. But I know this is a general greeting and it's plain acknowledgement of your presence.

These last two weeks have been complete mental exhaustion.  That means my nights have gone with either minimum hours of sleep, tossing and turning or staying up late which is not my norm. It means that I can be at work and trying to read reports or documents and not being able to focus, so reading over and over has also been causing headaches.  I just went through seven days of having vertigo in various stages. Of course the worst was not being able to get out of bed or the sofa, or keeping my head against the headrest as I drive and trying not to turn too quickly, to taking medication before the symptoms worsen, to finally waking up in the morning and being able to stand without missing a step. Whatever the case, I don't know if stress was a contributor.

But it seems that I may be seeing that light after all. One of Puppy's teacher aide's has stepped up to the plate and offered to watch him after school, but only Monday through Thursday. And unfortunately she mentioned it would only be temporary until I find someone or somewhere more permanent for him. I wasn't too happy about that, but it's a start. I'm just thankful that it will be someone dependable, responsible, and a person that knows him almost as well as I do if not better. Best part is that he respects her...or fears her, not sure--still, it will be a change and a new routine.

And Puppy is still trying to adjust to having his wallet in his pocket, or his hands when he thinks no one is watching.  He's showing progress in school in that he is still maintaining his workload and focusing without having the wallet consume his attention. He has returned to his study group and no longer with the babies so his confidence has definitely increased.  We still have discussions about him wanting to modify it with paper and/or tape, but whenever I stand my ground (so not what I used to do before), he has no choice but accept my answer and accept his wallet is the way it's going to stay. I always feel like the challenge is more for me than him. Weird.

Backup Call

It was one of those days.  I can usually handle just about anything when it comes to Puppy.  However, every now and then he is so talkative and debating my every response, that I feel like putting a closed door between us.  Not so easy when we are the only two people in a moving truck. 

We got home after a long day and just as the conversations were taking place in the truck, they continued after walking in the front door.  I don’t think there is much need to go over the conversation but know that nothing was going to stop him from asking question after question until he heard the answer he was searching for. 

That was it…I texted for backup.  I gave a brief description of what was going on between Puppy and me to his teacher.  I followed her instructions, but wasn’t successful in satisfying his need for answers.  One last text to her read:  “It’s not working. It’s going to take a call from you.”  And she readily answered, “Ok”.  And the phone rang.  I handed it to Puppy and he saw her name…”oh, oh...hello.”

Puppy and his teacher talked for a few minutes.  I could only hear his end of the discussion but I knew she had it under control.  He replied to her questions because now the tables were turned and she was asking and he was answering.  Once they were done he handed me the phone so his teach and I could talk.  She patiently explained how she made sure he understood what he was doing and it was as simple as asking him questions that he could answer about his actions and behavior.  Something about having him say it and hearing his own voice to make sure he heard the requests or rules that were being discussed.

After that one phone call, Puppy stopped talking, finished his snack and went to shower and followed it by jumping into bed.  I tucked him in and he repeated the rules of the day.  Sweet dreams, Puppy.

The Magical Classroom

Going back to my previous posting -- let me explain.  What I’m saying is that we have created our own language.  We use key words, phrases, even gestures.  Sure, everyone does with their parents, or spouses, or kids, etc.  And I’m just stating that Puppy and I have ours, too.   

Since Puppy obviously can’t be home all day, he goes to school, then daycare on Mondays through Fridays.  This is when our little world gets complicated.  He is going to talk to several people throughout his day and the difference is that they don’t know which key words I use at home, what phrases get the job done, and which ones trigger unwanted behaviors.

His classroom setting is priority.  He has so much structure there; we both would be lost without it.  In fact, it was only two years ago that this structure became reality for us because it was the only place Puppy was able to find himself. It took a very patient and caring teacher. But I wish I had a crystal ball to let me view his progress throughout the day.  I need to know the same key words and phrases that are used in the classroom that got the job done.  What was said, done or used that made him respond with such positive behavior?  I know there is a high percentage of respect that has been earned by his teacher and aides that has influence on Puppy. If they could only teach me, teach me how to obtain the same results at home.  Experience brings knowledge.  Knowledge provides support for experience.

#Youmightbeanautismparent

#Youmightbeanautismparent if you've seen this hashtag

This hastag has been going on for a few days now on twitter and even on facebook. I just thought you might like to read a few by clicking the link. However, there are so many more on twitter. Just search for the hashtag. Happy reading!

Our Saturday (Day 21)

Puppy and I had a wonderful weekend.  This past Saturday was the best we’ve had in a long while.  It started once we left the house to head out to one of our monthly autism support group meetings.  I was excited to go see the new office of South Texas Kids Rehab in town.  It is a new place operated by a couple (Gracie and Steve) who is dedicated to helping all kids. 

The theme for our meeting was “Socializing and Pancakes”.  Yes, that is exactly what we did.  Gracie and Steve actually cooked up pancakes for everyone.  There were also toppings of strawberries, bananas, syrup, whip cream, as well as milk, chocolate milk, and orange juice to drink.  So we had good food and a lot of chit-chatting between moms, our special kids and their siblings did whatever kids do (play, jump, scream, watch TV, etc.).  After finishing up with our breakfast, we decided to walk over to the park that was on the opposite end of the parking lot and across a small creek.  Plus, we could not have asked for a better day for great weather, it was absolutely beautiful…breezy, cloudy and perfect. 

All the kids had a fantastic time.  Even Puppy, whom likes to sit alone, couldn’t resist joining the others to swing from the moving handlebar.  He was so scared to swing at first; but then was so proud of himself once he swung across and the others cheered for him.  It was one of those lump-in-my-throat moments when I saw the natural smile come to his face and then the hand-flapping, can’t forget the joy coming from the hand-flapping…(mom smiles).

I will add that I enjoyed myself as well.  The other moms are such sweet yet strong women.  It’s funny how I never knew any of them until we joined this support group, and now we are uniting more and more on facebook, e-mails, out of town trips, at the park and our monthly meetings, always with kids in tow.  Thanks to the moms, Gracie and Steve, and the kids for sharing our beautiful Saturday.

Puppy's Obsession Strikes Again

I looked up obsessive-compulsive disorder yesterday and found the following plus much more.

OCD: A psychiatric disorder in which anxiety is associated with preoccupation with unwanted ideas (obsession), and with persistent impulses to repeat certain acts over and over (compulsion).

Anxious thoughts or rituals a person feels they can’t control characterize obsessive-compulsive disorder. If a person has OCD, they may be plagued by persistent images or by the urgent need to engage in certain rituals. ...

An anxiety disorder in which a person has an unreasonable thought, fear, or worries that he or she tries to manage through a ritualized activity to reduce the anxiety. ...

All of these definitions describe Puppy. He has been having stronger than usual issues/anxieties this last week. Although it is always present, this strong presence in our home drains him and me on a daily basis. Puppy's obsession with wallets has been the most difficult thing for me to understand and yet he is the person having to endure this overwhelming disorder. I feel it is the most difficult obstacle in Puppy's life.

It appears to be that he is able to focus and function at a higher level than before he had the medicine switch in June. I am also noticing that Puppy's arguments are clearer when he tries to make his point and his responses are quicker.

But this comes with a negative side, too. He has never been diagnosed as having an OCD, I have labeled it; the definitions fit to a “T”. During his moments of deep thought on his wallet, this disorder takes over and reverses the statement I made above about him being able to focus and function… His thoughts consume him completely and it becomes very difficult to re-direct him away from the wallet.

However, Puppy and I have been blessed with an exceptional teacher who is excellent at her job. I had not met another person like her. She is confident, wonderful, in charge and responsible. Whenever she speaks, we (Puppy and I) listen. She has never steered me wrong. And I bring this up today, because without her, this weekend may have taken a turn for the worst. I have seen what Puppy’s obsession can do when it takes over and I did not want to see a repeat of the horrible week we had. She made herself available and was able to calm him down with just a simple phone call and the sound of her voice.

I don’t believe we will be able to take away Puppy’s obsession, but I have hope that we can keep him safe from himself at best. Re-directing and finding other interests for him will be not be easy but will be priority on my list.

Dont' take away our hope

I came across another blogger just yesterday. I like what he wrote, but mostly because of how he wrote it. The words were kind, sensitive and human. Take a few minutes to read the post by Russ Ewell, "Hope: Kryptonite For Autism." If it helps to bring awareness to at least one person that we all need to have hope, it was worth repeating.

http://digitalscribbler.org/?p​=445

A big Thank You!

Puppy had one of those mornings again. He gets all worked up and ends up having an anxiety attack. On a side note, they aren’t as intense as they were before we changed his meds. He usually ends up correcting his own actions, calms down and talks himself out of them.

I don’t know how some days I don’t keep from having my own nervous breakdown. I know I am exaggerating because there is no way to go through the same emotions he has and simply because I can understand what is going on and he lives in a world without reason. Mostly, I have to say a great big “Thank You!” to the latest person to enter our lives. Let me tell you who that person is.

When I was given notice that Puppy was approved for personal care services, the Provider Services Office suggested that I put out a my own notice for an applicant because the employees with their office are not used to working with special needs children. That gave me the idea to search for a teacher aide that might have some experience working with children as a start and if that person also happened to have knowledge in dealing with the unpredictability and struggles my son goes through on a daily basis, this would be a great plus!

I sought her out amongst strangers not even knowing she was there. But by some miracle we found each other. I’m talking about Ms. H, Puppy’s PCS assistant. Yep, she’s also become my savior. She goes above and beyond the call of duty to check up on Puppy during the day and even after she’s left for the evening. She gives me advice and we discuss ideas to improve Puppy's routine. Rearranging his schedule also helps as a distraction to focus on anything other than his wallet. She has great patience, understanding and years of experience in working with special needs children at one of the local school districts.

I really like the way Puppy accepted her and responds to her. I’ve noticed his attitude changes whenever she is around him. He seeks her attention and companionship. And even though we are always reminding him to try acting like a big boy of 13 years, I can’t help but smile each time he squeaks and squeals and flaps his hands in bliss when she's in our home. She is a perfect match for Puppy.

Now allow me to tell you a little more about how this wonderful person. Oh, the weight she’s taken off my shoulders to help me keep my sanity, especially during the difficult times with Puppy’s tiresome behaviors. Ms. H has a kind heart and I can tell she enjoys what she does. Sure she’s told me so, but it shows, too. She doesn’t know it, but she lights up when she talks about her students. She’s a professional and yet you know she is aware of when to allow a personal moment get through when it’s needed. I don’t know many people, or actually I think she’s the only one that will end her text messaging with a smiley face. That smile always comes across at just the right time.

I am fully aware of the fact that Puppy and I have a special individual in our lives. Now we have to pray that she stays forever. I know that’s kind of extreme, but it can happen. :-)