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. :-)

Prescription Meds

I couldn’t help it. This morning I posted a status on my face book page that said, “Did I mention I how much I dread the mornings? Ugh!” This also isn’t the first time I post the same status.

I would like to hear from any parents that are administering medications to their children as a means of treatment for a condition they have, such as ADHD, etc. I want to hear different stories and reasons you decided to go this route. What are the medications for and how long has your child been taking them.

Puppy is diagnosed as having PDD-NOS with ADHD. When he turned eight (8) years old he was having numerous tantrums and meltdowns. He was having the worst time in the classroom and was becoming virtually uncontrollable. I remember a family member telling me to discuss it with his pediatrician. I realized later that the pediatrician never did a complete exam to identify his delays and I didn’t recognize he was not reaching the normal developmental milestones. I only knew his speech was delayed and this had caused him to fall behind. But because Puppy wasn’t given a diagnosis until the end of the school year, I still didn’t understand what was going on with him.

Anyway, his pediatrician listened to my concerns and prescribed Puppy’s first Rx for the ADHD. His teacher and I noticed he wasn’t improving and instead had a negative reaction to the medicine. We tried a different one, and the result was practically night and day.

In the following weeks he improved and we saw a calmer child with ability to function and focus. This is something we had not seen in Puppy before.

That was then, and this is now. I wrote in Already Week Four how we reached our goal to remove one of Puppy’s medications and replaced it with a new one. He has been so different. He’s definitely more alert, but with it comes his lack of sleep. But he doesn’t need it any more. He’s going to bed much later and waking up much earlier. I do not like this at all. In fact, I asked his pediatrician about it and he replied with telling me to wait until he starts classes again and if he is still having trouble sleeping then call him. He is more talkative, vocal and using sentences with references to emotions.

Bottom line is that he is showing progress and the switch in medications has been for the better to date. So let me know how it works out in your homes.

So why the status posting? The mornings are the hardest part of the day. Its when his meds have worn off overnight and he is bouncing off the walls. Even though he is a morning person in that Puppy has never given me trouble with waking up, he wakes up in grumpy moods. At least up until he takes his meds. Then we see the person transformed. I feel as though the meds prepare him to face a new day. He gives me that impression himself. I may always dread the mornings, but I'm am always thankful for another morning with Puppy.

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.

Deck of Cards (Part One)

We made it back home from our trip to the doctor's appointment safe and mostly sound. However, Puppy had a rough ride traveling to San Antonio. For some reason he had cards on his mind. I can only imagine that he saw someone smoking or the poster of the cigarette box outside a convenient store that may have triggered his obsession to be front and center on this morning.

So on our drive to the appointment; we have a habit of stopping at one of the newer convenient stores on our route. I’d say we were twenty miles before our stop when Puppy started to say he wanted to buy a box of playing cards. He mentioned even that he had money ($1.00) to buy it. He went on and on about needing to have these cards, and I quickly read between the lines to know that he would empty the box of the cards and modify the box to make it look like a cigarette box the very first chance he had.

I tried to deter the idea by giving him a list of rules he would need to follow if he was to purchase a deck of cards. He agreed to each one and promised to me that he was a big boy now and had every intention of following every rule I set out for him. I swear it was rather difficult to maintain my composure as I drove down the highway. I was laughing inside, where it counts. Puppy was lying through his teeth and giving himself an imaginary pat on the back for fooling me that he would keep his promises.

We made it to the store, got off the truck, walked inside, used the restrooms, grabbed a soda each, and made it to the cash register before he had enough time to look around for cards. We jumped inside the truck and I started it up. He buckled up and began to beg for more time to go back and look more carefully. I told him we had to hurry to make our appointment that was still some ways off, but that we would come back on our drive home.

He really had no choice, but he wasn’t a happy camper about it. Let’s just say that he made the next sixty plus miles unpleasant. He whined, cried, yelled, punched the armrest, punched the door and didn’t calm down until we were seeing buildings and started to look for a place to eat lunch. By this time, I wasn’t in the best of moods, so we opted for McDonald’s and made it to our appointment with 30 minutes to spare. I’ll have to get back to the story of our actual appointment next time. The story about this deck of cards is a long one I just noticed that Puppy can hear me typing at the computer and it is keeping him awake. So, this story will have to be continued.