Happy Anniversary!

A year ago was a busy time for Puppy and me.  I was at a place where I had so much confusion and worry. The daycare that Puppy had been attending for after school care had just notified me that the since Puppy was turning 13 years old, he was too old for the center. I was visiting a couple of new daycare places throughout the week; and we were inviting a new person into our lives and our home. Go back in time to see how busy and crazy things were at Changing daycare facilities. 

Ms. H was the brave soul to enter through the front door with intentions of working as Puppy’s PCS (personal care services) provider, and in reality she has become the next person of only about three whom completely understand Puppy with all his good and bad days, happy and angry times, tantrums and meltdowns and the self-injury. Ms. H would be focused on Puppy’s best interests, and finding her, someone who knew what she was getting into and would be able to handle the unpredictability that comes with the disorder…well, she was Heaven sent.

Monday, June 6, 2011, was so long ago and yet a year has come and gone. Here’s a brief recap of our meeting in Monday finally came.  After just one month of what seemed longer, we sat down and I asked her if she was comfortable and if she saw herself continuing to be my support. She said yes and that she didn’t foresee any problems.  I was so glad to hear that, that I pointed out to her there was a fine-print clause in her contract which said the job was for life. I wish I could have taken a picture of her reaction; it was a surprise and a little confusing to her because I'm sure she didn't understand at the moment it was a joke to break the ice. But as time goes by, our time together has been priceless. I wouldn’t change a thing. And I definitely wouldn’t seek for a substitute for Ms. H, because honestly, there is no one else like her. We still joke about her staying with us for life and I think she even tells her friends she has a job for life. I'm so glad we are still together and I dedicate this post to her.

I want to wish Ms. H a Happy Anniversary from Puppy and me. I am grateful to you for all you do and for putting up with both Puppy and me, but mostly I treasure what a wonderful friend you are to me. Thank you.

The good, the bad and the ugly

Titles for my posts don't always come easy, but this one did because this is exactly how our days have been lately. I suppose I'll take it from the top.

The good...  Ms. H came over the other day last week as part of our daily routines. Last week was also the final days of the regular school year. She was already looking ahead for ideas of how to keep herself and her 6 year old son occupied during the summer break and signed him up for Tae-kwon-do and swimming lessons.

Well, my ears went into alert mode and I wondered if maybe Puppy might be interested in swimming lessons, too. So, interested or not, I called up the instructor and briefly informed her he has autism and she was willing to give it a try. That's all I needed and signed him up.  Ms. H has been doing a fantastic job of watching over him in the afternoons, picking him up at my parents' after the school bus drops him off from summer school, then taking him to swimming lessons, then keeping him at her place until I get out of work. Routine is in place and all is well...so far.

The bad...  Puppy spent about an hour on Sunday at our neighbor's. Their family consists of the dad, mom, two boys and a girl, all younger than Puppy. But nonetheless, he went over like he usually does every once in a blue moon. Well he comes back and is very quiet, greets me and races upstairs to his bedroom. He was awfully quiet for a good while before coming back downstairs and then he started pacing.  He looked for a piece of paper and pencil (but a purple crayon did just fine), brought it over to me and asked, “How do you write present?” I spelled it for him and he wrote it down then walked away.  I thought to myself that he may be making a list of gifts he wants for his birthday next month. So he’s pacing and then stops next to me again. He asked me if he can show me something, and I say yes. He pulls out the piece of paper and hands it to me.

I read it and I ask him if that’s the present he wants. He whispers to me, “No mom, that’s what Mr. Segovia gave me. It’s old and he doesn’t want it, he has a new one.” I could feel my blood drain to my feet. And strangely it went rising right back up to my head in anger. But I wasn’t sure whom to be angry with, Mr. Segovia for giving Puppy something he likes or Puppy for taking it when he clearly knows he shouldn’t have one. It wasn’t easy to defend Puppy because clearly our neighbor didn’t know giving him a wallet was a no-no.

 

The ugly…  Well, every day since the first day of swimming lessons, Puppy says he doesn’t want to go swimming. But then Ms. H talks to him and convinces him to go and he does just fine.  The other ugly is the unnecessary debates we have on a daily basis both in the morning before school and in the evenings when I pick him up. Debates about why his teacher doesn’t allow him to carry anything in his pockets; about why he can’t go buy the wallet he really wants now and not wait for his birthday; about why he can’t have an itouch/ipod, everyone else has one; about why he can’t take the wallet the neighbor gave him to school; about why he doesn’t like his MP3 player so much anymore, etc., etc…

It’s not so pretty. I get headaches. I search for answers. I find none. I take it one day at a time.

The toes have it

My last post mentioned something about mimicking, and an older post He hasn't stopped talking since also explains how mimicking is just one of many characteristics autism has given Puppy. 

But putting all that aside, I was thinking we are due for a "cute” mimicking posting.  This is not the first time Puppy does this.  But this weekend, while Ms. H was doing Puppy’s laundry she found this…

Puppy decided it was time to color his toe nails and took the marker to them. I suppose it pretty much has the same effect. 

I wasn't able to get a recent picture to match the socks, but like I said…it’s not the first time he’s used markers on his toes and I knew this posting wouldn't be complete without the follow-up picture. So here’s an older picture from a few months ago. I couldn't resist taking the picture as he slept.

I asked him back then why he had painted his toe nails, and he answered, “Everyone has them colored.” I could only imagine that he sees mine and other women’s toes and hasn’t made the connection that men’s toe nails are not colored. When I tried to explain to him that boys don’t color their toe nails, he just said it was okay and he liked them like that. So be it. 

Saturday, already?

Like every other Saturday, Puppy wakes up before me and asks, "Mom, is it time to wake up?" To which I always quickly reply, "No, it's early so go back to sleep."  But then he answers back with, "But I'm not sleepy!" And that is how our Saturdays begin.

Today has been extra special.  We had the chance to spend the day alone with only us two in the house.  Usually we have Ms. H here, she provides PCS assistance during the week and on Saturdays to guide Puppy through the chores and helps me keep my sanity by having another adult whom understands our lives. But she had been helping prepare all week for a fundraiser today and I thought that was something she had to lend her support with and we'd catch up on Monday.

We've been doing most of the same things that Puppy and I do, but because its just us two, I promise Puppy has been extra verbal and a complete chatterbox and repeating phrases all day. And I mean ALL day! I think I've finally lost my mind and can't take too much of this any longer today. Even as I'm writing this blog he is standing at the bottom of the stairs asking if we're going to grandma's for the umpteenth time in the last 30 minutes. I've heard the front door and the back door open and close so many times today that I'm probably going to have to change the worn out locks (Puppy has the habit, although a good habit, of locking the door behind him every single time he enters the house). The back door is already so bad it is difficult to turn, and I got locked out because of his "good" habit when he came indoors ahead of me.

So anyway, I'm going to step away from the computer with just enough energy to make it to the pain reliever medicine and take something for my headache.  I just hope it gives me strength to make it through the rest of the day.  Remember, I take it one day at a time, so I'm not even thinking about how wonderful tomorrow is going to be, just the two of us, again.

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. :-)

The favorite wallet

I know I am supposed to finish up my stories about our last doctor’s appointment and the deck of cards, but today has been a tough day and it’s distracting me from remembering what happened on our trip.

Puppy is having one of those days, or rather one of those weekends. All weekend has had him on a roller coaster ride obsessing about either one wallet or another. And almost always it is about wanting the wallet he doesn’t have. He remembers every single feature about each wallet for instance how many pockets, in which direction the cards slide in, where the ID goes, if it has a zipper, or has a flip-it for extra cards, etc. Puppy has gone through so many wallets in the last three years that I find it hard to imagine he can even have a favorite. But he does every now and then. And that simply means that he has an uncontrollable urge to have his favorite wallet for the day. Sometimes this lasts for only a day. But I’ve even seen his urge only last for hours as he flips from one wallet to another. He’s explained to me that he closes his eyes and he can see the wallet so clearly that he can feel or smell the wallet. Yes, all senses become a part of this need.

When all else failed, Puppy went searching for his supplies and with paper, scotch tape and scissors he sat at the dinner table to make a paper wallet with the features he wanted. This usually satisfies him temporarily but I let him make them because it calms him and stops the tantrums. So he had his paper wallet for a few hours before he went back to the last wallet he was using. But it didn't last long and we were back to tantrums.

Anyhow, Puppy has been angry at me for most of the weekend because I have not assisted him in producing an older wallet that has been explained to him as “gone to the landfill” and never to be seen again. So what was his answer to this? On Saturday, he carefully searched our kitchen cabinets and found some trash bags and brought them back to me. Then he put into plain words, “We can put our hands in the bags and pick up the trash and find it.” “That’s how grandma picks up trash outside.” Yep, he said that, too. I struggled to change the subject. It is a struggle because I lack imagination, but I try. I remember that Ms. H (Puppy's awesome PCS assistant) was in our home and getting ready to leave on that cue, and together we managed to get him focused on heading out the door for a trip to the hair salon for a haircut. I was glad she is here to see some of the emotions Puppy goes through and to also help me by jumping in where I go speechless.

Sunday wasn’t too unusual. We went back and forth about why he couldn’t have “the” wallet he sought and he would get upset and throw his tantrums. I’d try my best to ignore it but when we are the only two people in the house alone, it becomes a challenge. Nonetheless, we made it through the morning and headed out the door by 1:00 P.M. We went over to my parents’ home even though they were out of town. Then Puppy and I were treated to lunch by my brother and a friend as we enjoyed a meal at one of our favorite restaurants.

I like going to my parents’ home because Puppy can wander around outdoors and is usually at peace when he isn’t closed in by four walls. So around 5:00 P.M. we made a trip to the grocery store before heading home. He was not his best and this store is one of the worst places to take Puppy to because it has a fair collection of wallets for sale. He did pretty well, but he was irritated that I didn’t allow him to look through the section and yet we made it home safely.

After unpacking the groceries and other items we purchased, he was still unsettled about not having his favorite wallet and we continued our (him) whining and (me) ignoring episodes until he finally gave up and got into the shower. He wrote a note asking God to help him and to find the wallet for him. I’ve tried to teach him about faith, but he’s gone a bit overboard on the asking. It is also fairly hard to explain to him how God or Jesus or angels can help us in our time of need. He just knew he needed his wallet and he was going to the top. The best part of the evening was that he was satisfied with his method of making his request that went over my head and didn’t have a problem falling asleep tonight. This is rare and so welcomed. I’ll wait and see what the morning has in store for me, us.

First week down

Today completes Puppy’s first week of four in a process that will slowly remove one medication and replace it with another by decreasing and increasing the doses, respectively. So have I seen any changes yet? Yes, the first two days did bring about a couple of crying episodes with no real cause for them. I already see fewer bursts of anger, yelling and anxiety attacks. But overall, he is more alert, talkative, and creative, as in wanting to draw, cut and paste.

It almost seems as if his alertness is making him aware of more things. For one, his voice is changing already, and has been upset that he can’t talk like everyone else. But I also interpret that he wants to make conversations with a back and forth dialog. This seems to bother him several times a week. I sure wish I could get inside his head and understand what he is trying to communicate.

Two, he is now aware of the fact that it is summer vacations and a break from school work. We went over the schedule of “How many days do I go to daycare?” and “How many days we stay home?” Each question followed by a “then?” and I went into a loop. This was followed by him saying, “Wow, that’s many days, no school!”

Three, he is getting particular about what he wears. This may have started a few months back, but every night before bedtime, as part of the PCS schedule, he will layout his clothes for the following day. Some days after he wakes up, he goes back into the closet to pick out something different to wear. He even has favorite socks! I bought him white and gray ankle socks and he won’t wear the gray ones, saying he doesn’t like them anymore. The socks are of the same brand, shape, emblem, but still a no-go. Go figure.

Four, he wants to play outdoors. He has always enjoyed being outside, but now he wants to play with the ball, kick it around, water the grass, etc. Usually he would simply sit on lawn chairs or pace up and down the sidewalks. I like this Puppy better because I like that he is interested in being more active.

I could keep on going, but I think you get the picture. And I’m going to work on that…pictures. There’s a place to upload to this webpage but I haven’t tried it yet. Maybe I’ll take a few minutes on the weekend to test this feature. Wish me luck on this.

Monday finally came

Puppy and I started our new week. Unlike most other days, we were both ready and eager. We are adjusting with the changes, and moving along smoothly.

Monday went pretty well. I drove Puppy to school for his first day of Extended School Year, I went to work, then picked him up at the new daycare where he was left off by the school bus driver and monitor after his release from class. His teacher there said he had a terrific day and I was very pleased to see him surrounded by new friends. They were all on the carpet playing and because he was having fun, I actually had to call his name to get his attention. I liked seeing a big grin on his face that let me know he was having a great time.

Then our ride home goes well, too. And for another first, we were having the person who will be assisting with PCS coming over. She did, and we had an introduction that went better than expected, Puppy liked her! She will be coming into our home every Monday through Friday for two hours in the evenings, and three hours on Saturday.

Let me just say that she is wonderful. She has experience working with many special needs children of different ages. I could not have found a better person to let into our home.

We will continue to set up a schedule for Puppy that covers his new school hours, daycare and PCS hours at home. I can only say that I am getting myself prepared for the roller-coaster ride, and yet...I'm hoping it's a carousel that has no surprises.

Ready for a fresh start

Well, I did it. After much deliberation, today I withdrew Puppy from his daycare with Teacher Ana, and registered him at a different daycare. The change officially takes place on Monday.

I thanked Teacher Ana for all her help these last few years. She has always been there for me. She never said no to early drop-offs and late pick-ups, and to unexpected drop-offs, helping him do homework and keeping the bus driver and bus monitor in line. She taught Puppy many things. She taught him discipline and respect. She was firm and caring. I can write a list, but there's not enough space.

Puppy is very fond of her and this is important when it comes to having someone care for my son. And yes, there were tears. Mostly mine, but it felt good to know that we made a friendship that will last a lifetime. We will miss her.

I am just praying that I made the right decision. Now it's back to learning new faces and people. New rules and new routines. But we are so ready to make a fresh start. Even Puppy seems excited.

My interview for Puppy's PCS assistant was switched from Friday to Saturday. Someone forgot to cross their fingers. But mine are still crossed with hope that we can make a schedule to work for both of us. Oh, and that she agrees to take the job, too.

Well, I have a list of things to do tomorrow and I can hear my bed calling my name. I must listen. Good night Puppy. See you in the morning.

Changing daycare facilities

It's been about a week since I went to visit a daycare facility that I'm considering for Puppy. It's actually a difficult decision to make and is not being made without careful thought and research.

I am very happy with the director at the daycare he has attended for almost four years now. Teacher Ana (as Puppy calls her) was quick to figure him out. She has never had a problem with his behaviors and has even been helpful in continuing lessons learned at home, school or even those she set up at daycare. Routine is very important and we all have to be on the same page.

This January the daycare was moved into the director's home and it is now a licensed home care. It's still the same if you ask me, just limited to one room instead of an entire house. Her license is for children between the ages of 6 months to 12 years. So come this July, Puppy will be too old at 13 years. The director was kind enough to offer us one more year, but with Puppy being the oldest and tallest child, I'm taking it as a sign that we need to move on. Besides, I'm hoping Puppy will get a little more activity, find some distractions away from his obsession and meet a few older kids at this new daycare.

I also got more good news yesterday! I received a call from a teacher aide at a local high school that has answered my ad for PCS hours for Puppy. She has experience working with special needs students for the last 6 years. She may be the answer to my problems. We have an appointment to interview each other on Friday, so I'll write about the results afterward. Everyone cross your fingers!

And we march on

Memorial Day is set aside each year to remember those we have lost while they were at war. I am thankful that our family has not lost anyone while serving their country. Currently, I do have a cousin who is serving in the Air Force and has had two or three tours in the Iraq war. I'm not even sure I said that right, but bottom line is that he has gone and come back in one piece. I regularly say a prayer for him and all service men and women in our armed forces.

However today, I did not attend any local memorial services, I was guilty of staying home. I went through my routine minus the breakfast and getting into my work clothes and instead slept a little later and woke up Puppy for his usual routine. As I mentioned in my previous post, I drive him to school in the morning now. So I did, and I got down to leave the school nurse Puppy's prescription refill for the month of June. Then I returned home and grabbed a load of laundry to wash. Once that was started, I fixed myself a cup of coffee and sat in front of the TV for a while. Re-runs was all there was. I did a little house cleaning, hung up clothes, washed dishes, etc.

I called my sister Margie to come cook us some lunch. I'd provide the food if she would cook because she knows how to put flavor in all her meals. Lunch time came and went faster than I expected. But we ate well, and even left some for Puppy. As I was thinking of Puppy, his teacher texted me asking if I was going to pick him up or should he go on the bus. He was supposed to get on the bus and be dropped off at daycare for me to pick up later. But he knew very well that I didn't get dressed for work and he confidently told his teacher I was picking him up after school. Oh Puppy, I couldn't help but laugh at his genius plot, so I went to bring him home from his day at school.

After settling back home, I made a call to the woman who had shown interest in working for Puppy and me to provide PCS (personal care services). She said that 4:30 PM was good for her and she'd come to discuss details of the job; she seems anxious to start. Well, needless to say that I was still waiting for her at 7:00 PM. I never received a call from her and have no clue as to why she didn't show. I got a bad vibe from this and I fear she may not be responsible or mature enough for the job. Would you think she is?

I contacted a friend who has been helping to find someone to work the hours we need with Puppy, and she said she would continue to search. It's a shame that we couldn't get started already. I'm ready, but I won't leave Puppy in just anyone's care. I am having a difficult time stressing over something that should be so easy. I ask for patience, patience and more patience. And so, we keep going and we march on.