What is best?

Well, followers…the weekend came and went. Leaky water pipe was repaired, laundry was washed and put away, TV shows were watched, and visit to my parents’ was made. All in all, we had a nice weekend. Yeah, there was some grumpiness and grunts and attention seeking actions that also took place, but that is all considered normal or routine in our home.

In my last posting I mentioned attending a two-day conference on autism. During the morning break an opportunity to ask questions presented itself, so I combed my hair behind my ears, ironed my blouse with my hands and went to the front of the room to seek knowledge.

My question was about something that is currently happening in our home. Puppy’s attention has been absorbed by wallets for the last year or so. He looks at it, turns it over, puts cards in their place, then removes the cards and places them in their slots again, then squeezes the edges of the wallet to make it as slim as possible, etc. There are too many actions to list here, but in my eyes, my son has an obsession with wallets. Nonetheless, I went up to one of the presenters and asked if she had any advice on obsessions as I quickly described what Puppy had been doing all this time; and in a most confident voice she told me I was wrong. It is not an obsession, but rather an action he does to keep himself isolated from his peers and others in general. This self-isolation is exactly what I should try to keep him away from doing. She even suggested that I find other kids (or relatives like nephews) to show Puppy their wallets for comparisons and as a shared interest to bring Puppy out of his isolation.

My surprise to her advice sent me to my son’s teacher the very next day to repeat what was suggested to me. I was comforted to find that my son’s teacher and I remain on the same page to continue with the practices and initiating ABA therapy as it relates to the wallet. We have been working toward having him pull away this attention from the wallet and leaving it in his pocket as long as he can focus on his daily school activities. If he is unable to concentrate, then the wallet is placed in his backpack until the end of the day.

Bottom line – sometimes you just have to follow your gut and do what you feel is best for your child.

Just one question: How does one know if they are doing what is best for their child?

Claire

My First Autism Conference

This past week was special for me. In the past I have been to local support group meetings, read articles, followed my imaginary friends on twitter and/or facebook, as well as other bloggers and their websites. But there's something to be said for having a person in front of you whom knows exactly what you are going through and can answer your questions plus give you examples, on the spot.

Our local support group sponsored their 10th annual conference that was over a two day period. The first day featured Emily and Lisa Iland. A mother and sister to a person with autism. They spoke about their lives and experiences with Tom, and how they had conducted their own research studies on autism. Their presentation was informative. I asked them both a couple of questions and was surprised to learn that I was approaching a few of my son's issues in a manner that was intended for another type of characteristic. I have already discussed this with Puppy's teacher and we are going to revisit this more carefully.

The second day of the conference had a special guest speaker, Eustacia Cutler. Yes, she's probably the most talked about mom in the autism community since the movie about her and her daughter came to HBO and Hallmark last year, Temple Grandin. She spoke so eloquently about her life and that of her family. She is a wonderful storyteller. I felt myself lost in a trance as I was listening to her every word. She made an strong impact on me. I'm not even sure why. I pray that others will not have to go through the difficult struggles she did because of the lack of studies, diagnosis or education on autism as when she first learned of her daughter's disability.

During the afternoon session of that second day, Lisa Rogers, a Behavior Specialist of San Antonio, also made a presentation. Some the techniques and therapies she spoke of I have or am already was using with Puppy. I feel we may have started a little too late, but I see the progress my son has made throughout the years. It may take a little longer, or maybe not. Only time will tell.

I am glad to have attended and learned new ideas from each of the presenters. I think that maybe I waited too long to seek help from others in our community, but now there is no turning back. Only I can be the best advocate for my son. I also promised to continue learning myself.

Claire

A Puzzle Piece Pin

A twitter/facebook, autism advocate and father wrote something so simple:

I like to think of my child as having an extra puzzle piece rather than missing one.
(via Stuart Duncan - Autism from A Father's Point of View http://www.facebook.com/autismfather)

Last Saturday (January 15) my son and I attended a new autism support group. As we walked in, I was handed a puzzle piece pin as were the other parents. After the meeting, I removed the pin from my blouse and attached it to an auxiliary cord that hangs from my rear-view mirror. I like having it there. Reminds me of Puppy while driving – just the same as the pictures of him on my desk also put a smile on my face. The meeting went pretty well and I was able to meet some new families and check out the new facility that has just opened up in town.

Well, this past Tuesday as we were driving home, Puppy reached out to touch the puzzle pin and asked me, “What is this?” and “Why do you have it here?”

I turned to him and said, “It’s a puzzle piece, and it reminds me of you because you are my puzzle piece.” Of course he was confused. Oh sure it was all so clear in my own head, each word I was saying made perfect sense to me. But my son just looked at me and asked, “What puzzle?”

So knowing that I was in a place we had not gone to before, I told him it was a pin from the place we went to on Saturday, the one with the indoor swings, slides, etc. and that the people were all there because we love our children so much and we want to share our stories with each other. I followed it with, “You liked that place, right?” And he had enjoyed the swing that was big enough for his 5’7” and 150 lb body. He nodded and his attention quickly returned to his favorite thing, his wallet.

When we arrived home, I sat for just a couple of minutes in the truck and looked at the puzzle pin. Soon, I will have to find the best way to explain to him that he is my greatest joy just the way he is. I wouldn’t change a thing about him, MY puzzle piece.

Claire

A Good Day

Yesterday (January 12, 2011) was quite a special day.  From the moment Puppy woke up to the moment he went to bed.

Why you ask?  It was special because my son had a “good day”.   I know you’ve heard that children with disabilities or any child for that matter, have good days and bad days; this was Puppy having a “good day”.

I woke up Puppy around 6:15 A.M. to allow him time to stretch before having to get out of his warm bed to take a shower.  This is not his norm, he usually showers before bedtime.  But he said he was tired the night before and asked for the chance to try something different.  His average mornings begin at 7:00 A.M. to allow enough time for him to dress himself slowly and follow through with his pre-school routine. 

So the wakeup call goes smoothly.  He opens his eyes and although he turns and pulls blankets over his head, he grunts to me that he is awake.  It only took about two more visits into his room to get his attention and get him going to take his shower, no complaints.

Showering and dressing himself went effortlessly.  I was downstairs having my “me” time, finishing my breakfast.  He came downstairs and was in such a good mood and wide awake that his request for pancakes was difficult to refuse.  So there I was, making my son pancakes before I returned to get myself dressed and ready for work.  He was humming and squeaking and just so happy to be having his favorite food.  I should have taken a picture.

After breakfast, Puppy had one more request. “Please send teacher a note that I will keep my wallet in my pocket and I will behave.”  He’s routine is to arrive at the classroom, hang up his backpack at the entrance and place the wallet in the backpack.  Allowing him to keep it on his person is distracting to him because it’s his obsession.  So I made the note and reinforced to Puppy that the teacher has the last word and she makes the rules in the classroom.  The teacher may still say to put the wallet away and he will have to follow her instructions.  (Footnote to a prior posting "A Long Weekend":  Both Puppy and his teacher were in a hurry to make the bus at the end of the day on the previous Friday, and this was the reason his wallet was not returned to him to have over the weekend.  The teacher and I talked about this and she apologized for the oversight.)

Finally, the bus arrived and he was on his way to school, happy as can be.  I received a text from his teacher after lunchtime.  She said he was doing great and was handling having the wallet in his pocket very well.  I can only assume the remainder of the school day went equally well.

My sister was also headed home after work and as we spoke on the cell phone, she mentioned she was closer to the daycare than I was, and offered to pick up Puppy.  Keep in mind that this is the same sister that Puppy cannot stop repeating her name.  However, it worked out pretty good because I was tired from work myself and welcomed the time to unwind.   They got home and Puppy was in a pleasant mood, even asked me to help him with homework.  I didn’t want to interrupt the moment so we went right to it.  My sister said they took a detour to the store at the strip on the way home, picked up a few items and added that Puppy didn’t ask for a thing (another surprise).

We fixed supper, ate, and after sitting at the computer for a while…Puppy announced he was headed to take a shower and then it was bedtime.  Everything was just falling into place, one step at a time.  All was done and Puppy was in bed.  I enjoy going into his room while he’s sleeping and I check his blankets and stuffed toys, make sure his wallet is under the pillow, give him a kiss and wish only sweet dreams for him.

It was a “good day”.

Claire

A Long Weekend

It’s finally Monday (I said as I let out a long sigh).   I remember sitting down to write last night and waiting for this day to come.  Now… not so much.

If you are actually keeping up with my blogs, you already know that this weekend was rough for Puppy and all those close to him.  His teacher kept his wallet over the weekend and it just about drove him and me crazy.  He was best described as a single puzzle piece, incomplete and out of place.  Puppy identifies himself through his wallet and being without it was heartbreaking and difficult to watch through a mother’s eyes.

Over the last couple of days, my son was preoccupied with making paper ID holders and paper picture sleeves.  He’s become pretty good using paper, scissors and tape.  But when he does his cut-and-tape quickly just to get it done, he doesn’t take the time to measure and then has a fit when the wallet won’t close well or the cards and pictures won’t slide in smoothly.  When I can’t take the frustration in his eyes, I try to remain calm and help him by talking him through the steps needed to achieve the best replicas of the missing parts to his wallet.  I have learned much patience, but I also learned that sometimes I forget that simple tasks for me are like mountains to climb for him.

We had a party to attend on Sunday afternoon.  No big deal except for the fact that it was at a location inside the mall.  We used to take more trips to the mall in the past years, but the older he gets the more difficult it becomes to enjoy visits.  This was one of those not so pleasant trips.

I parked outside a department store that gave us a fairly close entrance to the party place and the convenience to run through the store and buy the birthday gift for my grandniece.  My son’s face lit up when he saw we were going “shopping”.  Right away he wanted to go to his section of the store and look for jeans and a wallet.  I explained it was not his birthday and we were only shopping for a birthday gift.  He stressed that he needed these things.  I reminded him that he had jeans and a wallet and the items the teacher had were going to be returned to him the following day. 

Go ahead, shake your head.  If you are familiar with those on the autism spectrum, this kind of conversation never ends well.  And it didn’t end well.  Puppy started raising his voice and putting his hands to his face (he used to scratch his face) and jumping up and down while we were waiting in line for the register.  Asking him to calm down was working but he would start right up again as quickly as he stopped.  He began whining and begging and I was so ready to call it a day even before we made it to the party.  But we were able to make the purchase and race out of the store and to the party without extra items for Puppy.  Whew!

The party went well and I think Puppy enjoyed himself.  He was fine because the party was at the “Imaginarium”.  It’s a daycare designed to entertain and babysit children while parents or caregivers shop at the mall.  This place has a section for kids to make things with paper and scissor and tape.  Anyone see where I’m going with this?  Yes, he was in the perfect place.  He made his yellow sleeves for the wallet and played with some other activities.  We had a good couple of hours at the party and I had a little time to myself while I watched him play.

The end to those two hours was a repeat of the earlier visit walking through the department store as we walked to the vehicle.  But we survived through the whining, screaming and tantrum all the way home.

And just when I thought it was over, the sun rises on Monday morning.  My son was not a happy camper as he woke up remembering he was still missing an important part of himself, his cards, pictures, etc.  He was grumpy and shouting and refusing to get moving and he did his best to make my morning a very long one.  Needless to say, the bus arrived on time and he was not ready.  He had sat down to make yet, another pocket for pictures and cards before school.  He screamed and shouted, “NO! I’m not ready!” “No bus!”   I walked up to the bus and let them know it was definitely a Monday and we were having a bit of a hard time being ready.  Puppy came out, gave me a kiss and got on the bus.  I can only hope that his day got better.

Claire

Back to School 2011

Last week was Puppy’s first three days back to classes after the long holiday break.  Each day was a bit of a struggle for him to get back to his routine and classmates.  Well as it appears Puppy had too much time away from school and classroom rules that he wasn’t able to keep his focus on the instructions during class.  His focus was on his obsession with his wallet.  The wallet is on his mind 24/7.  He will touch his pocket to reassure himself the wallet is there; he will take it out and look at the outside cover; he will pull out all the cards and place them in order over and over; and he will open and shut it over and over to hear the slap of the tri-fold sides close to prove to himself the wallet is not over stuffed with cards, pictures or receipts.

Last Friday he was at P.E. class and playing with his wallet.  When the coach tried to get his attention, Puppy got upset and flipped him the bird.  He picked this gesture up last year and has been pretty comfortable using it anytime he is bothered.  Well, his homeroom teacher felt that the disrespect to his coach was reason enough to take the wallet away from him.  I would agree with her as I have many times before when using this tactic to follow through with ABA therapy.  But what I didn’t agree with was that she decided to keep his wallet over the weekend. 

Friday evening Puppy had a slight meltdown on the way home after I picked him up from daycare.  I usually ask him about his day and he began telling me that he didn’t have his wallet and continued asking me why the teacher kept it.  It was too many days for him to accept and manage without the wallet in his possession.   Even though Puppy was able to tell me step by step the reasons he didn’t have his wallet, he still did not accept it and was again filled with anger at the teacher instead of trying to understand that he had done something disrespectful and improper.  Puppy is observant of others and flipping the bird is an action he’s seen way too many times from other students.  He also sees that these other students are not reprimanded for their actions.  It’s difficult to explain some things to him and some more than others.

We are in for a rough weekend.

Claire

In the Blink of an Eye

Maybe one or two of you follow me on twitter and saw this morning that I tweeted, "G' morning. Good news...Puppy woke up in extra good mood today! Many kisses n hugs.  His last vacation day before classes begin for the yr."  Did you read it and smile?  I did while I was typing it for the first time this morning.

Well, that lasted all about 10 minutes.  Puppy then started calling, "where's my shirt, my pants...mom!!!" After I directed him that his clothes is in the same place it has been ever since we've lived there, in his closet, he starts with, "which shirt, I want Levi's not W (Wranglers)!  Then asking him to tie his shoes prompted the response of, "why, why, why, I don't want to."


By the way, the drive to the daycare was pleasant and I got another kiss and hug as I dropped him off.

So, anyway...life goes on.  I love my Puppy and couldn't ask for anything else.

Claire

A Close to 2010

I had a couple of drafts started in December and wasn't able to finish them for some reason, but I also wasn't able to get back to them because the general idea was also lost.  So here I go again, making another attempt at posting my stuff for my two readers.

Although today is January 3, 2011,...I think I’ll end 2010 by going back to one or two topics from previous posts and give an update to what happened or is now happening. 

Christmas came and went, whew.  Puppy had another successful year of believing in Santa Claus and even played along with me when we pretended to catch a glimpse of Santa looking in through the window.  The teacher let me know that his classmates are also believers of the guy in the red suit, so at least for one more year, I allowed the magic of Christmas to be paired with the secret gift giving.  I can’t say Puppy’s behavior improved while waiting for the big day, but then he wouldn’t be himself if he had.  This is all a part of life of living with autism.

Puppy has picked up a rather odd habit these days.  He is grouping it with his need for attention and has made most of my sister’s life and presence a difficult one to handle, but mostly for her.  Puppy has started to repeat my sister’s name over and over.  He’ll look at her and say her name and wait for a response.  And when he notices she avoids making eye contact with him, he will go up to her and give her a slight touch on the arm as he says her name.  He can repeat this for about 20-40 times in a couple of minutes.  She can confirm my numbers.   So this comes back to the question on a previous post, is he listening?

We have coached Puppy to reduce the number of times he repeats my sister’s name to “one time”.  He will do it once, and when about to repeat, he says the name then tells himself, “one time”.  But as you can guess, he will do it again…and again…and again.  The fact that he says “one time” means he IS listening.  But is there a magic phrase that will translate to him that this means no more repeating?

We have tried following instructions from his teacher as she has directed us to ignore it.  Let him say the name and don’t answer.  She thinks that the lack of response will trigger him to stop doing the unwanted action.  Nope, hasn’t happened yet.  She is having some trouble understanding the problem because she isn’t witnessing it.  Puppy doesn’t do this to anyone else.  He has chosen my sister as his person of interest and is going to get her undivided attention, whether she likes it or not.  Wow, this is strong and now that I’ve written it, I see how huge it’s growing.  Does anyone have any suggestions for us?  Please let us know.

Claire