Scribblings

Missing T

This week I thought I'd have plenty of time to finish sorting out and then posting the hundreds of pictures TB and I took on vacation. Why? Little T is spending the week with his daddy and family on vacation! I've been going through pictures but not really doing very much .... we really miss the little guy!

Hope you're having a wonderful time, Little T, and see you soon!

Now...back to those pictures...

Happy Mother's Day, and Billy's Home!

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What pretty flowers! I'm hoping that all mothers had as wonderful a day as I did. The best gift of all was having us together. TB, Kristin and I went up to NY to get Billy and bring him home for the summer. It's nice to have him back for a couple of months! To see the rest of the pictures I took today, just click on the pic!

Quick Update on Little T & Other Stuff

I just asked TB to turn off the comments for this blog. I'm sorry to have to do that but until I find a way to screen out the spammers without having to go through and delete all the junk, I just have to do it. I just deleted 275 junk comments and MT only allows me to go at a 20-at-a-time pace so you can imagine how time consuming that is! And I have to delete junk comments at least twice a day so that they don't build up!

I meant to update about our little Tomas. He is doing so much better! He willingly put on the nebulizing mask at the doctor's office when I last posted, thank goodness, and so he got a full treatment. Linda's been giving him his meds and he's been doing much better! He still hacks a little bit but the meds are really helping!

This picture was taken at the restaurant this morning.

Happy Birthday, Billy!

It's hard for me to get my mind around it but my "baby" boy is now 20 years old! This is the first year we are not celebrating Billy's birthday together because he is still at school. He has one more final and then TB, Kristin and I will be going up to NY to pick him up and bring him home for the summer.

In An Emergency...

I'm worried about our little T. Linda took him to the doctor yesterday because he was wheezing and his breathing was labored. It turns out one of his tubes fell out and that ear became infected. The scarier part was that they did a pulse-ox test and his O2 level was only 90%. They had to do a nebulizing treatent. Up until that point, Tomas was very cooperative says Linda but when the nurse came at him with a mask, he began to fight and scream.

It got so bad, Linda says, she told the nurse to stop and leave. Linda held the mask by Tomas's nose and the nurse kept haranging her, saying you're not doing it right! Linda felt that at least this way, Tomas was getting some benefit although the nurse was saying you're wasting the medicine. Okay, now, by then Linda had told the nurse that T is on the autistic spectrum. Aren't pediatric nurses supposed to know what to do when they have a special needs child? Surely there is another way to do this. Tomas has never allowed anything on his head or face, no hats, fake noses or what have you.

Anyway, after 3 hours, they were finally able to come home. By then T's pulse-ox was up to 93%, still low. Linda told me they would have to return in the morning (this morning). So they've been gone almost 3 hours again and I'm wondering what's happening. Will they have to send T to the ER? I'm very worried.

Tomas At Play

Today when Tomas sat on my lap and watched me play Chuzzles, I heard him say, "blue, blue!" Oh boy, was I happy! I'd heard from Kennan that Tomas can run and jump over an object and that he was saying blue and yellow but hadn't seen or heard yet myself. But as I moved my cursor over a blue Chuzzle, he said it and it was clear as a bell, "Blue, blue". His teacher has written us notes that he is progressing quickly through his program and can match colors and shapes. He's still fairly "self-directed" but he's getting much better at complying with requests we make of him.

At dinner time, I was remembering what the early intervention teacher said once about having Tomas sit in a booster seat so that his feet would touch the chair. It's supposed to help a child feel centered. Tomas doesn't like his booster seat but he does like his little chair and table so we moved it close to the big dining room table and it seemed to work. He had both feet on the floor and his own table to sit at and he just seemed much more comfortable.

For some reason, putting on his pants and/or shirt remains an issue. We haven't quite figured that one out all together. I know he prefers his pants to have snaps and zippers. Maybe that's why he's reluctant to put on jammie bottoms or track pants. As for the shirts--we also know he does not like button down shirts. Polos and tee shirts are fine but not always. We are all a work in progress.

I took pictures of Tomas at play the other day. Click the picture to get the rest of the album!

A whole lot of remodeling going on!

Now that there are 7 of us, we decided the smart thing to do would be divide Heidi's humongous room into two. This way, Billy has a room to live in when he's home and we don't have to make Kristin, Heidi, Linda or Tomas double up with anyone. Heidi cleaned out her room as best she could over the weekend and today came Phase I: taking the bunk bed apart and moving stuff out of the room.

Ready, set, go! To see the pictures I took today click on this pic

How did Indigo react? Check out This That & The Other Thing to find out!

Small Update

It's been another lovely weekend, even nicer than the last one because of the milder temperatures. TB and Kristin continued working on our garden. Check it out so far:

Linda worked on a project of her own...painting the bedroom she shares with Little T!

Kennan and T spent the weekend together and had a wonderful time. Tomas has begun to run and jump! He also can blow hard enough on his pinwheel to make it spin. He's really coming a long way since this time last year!

Still, there are ups and downs. It was pretty clear T did not want to come home after such a great weekend with his dad. It's hard enough on any kid who has to go back and forth between households but I guess it's even moreso for T because he can't tell us yet how he feels. With time and work, we are hoping and praying he'll have plenty of words to tell us.

Wordless Wednesday

Earth Day at our house

Want to see what TB, Linda and Kristin did to celebrate Earth Day? Click the pic! Heidi was at work today and what did I do? I was the photographer!

Play

We're impatiently waiting for more spring like weather too! Our play has been indoors lately. This picture was taken at the Children's Museum.

Just For Ryan

Happy 11th birthday, Ryan, we wish we could be there to celebrate with you! Have a great day! With love from all of us!

What can we do on a rainy miserable day?

We can play Candy Land!

I was saving the game just for a day like this one...raining cats and dogs and just totally miserable outside.

I opened the game board and took out the pieces and the cards, leaving them out for a little while until Tomas noticed them. He enjoyed the colorful trail leading to the candy palace and marched the people around. For a while, I played the game with all the pieces, moving them from colored space to colored space. Tomas does a lot of watching from the corner of his eye and I'm sure it won't be long before he's playing this game the conventional way as well as his own imaginative Tomas way.

Candy Land is back in my life once again! I played it as a child, played it innumerable times with my kids and now am appreciating it all over again as a nana!

Wordless Wednesday

Happy Easter 2007

It is so cold out today! I heard on a weather report that the high today will not come close to the temperatures we had on Christmas Day. It makes me wonder!

We are off to TB's mom's house for dinner today but first I wanted to wish all my friends and loved ones a Happy Easter and I wanted to show off the lovely flowers in our bedroom.

Yesterday, TB gave me this lovely arrangement:

and then this morning Kristin surprised me with this lovely lily

I so love flowers!

The pictures I've taken for Easter so far are here. I may be adding more later!

Wordless Wednesday

Happiness Is ...

...precious time spent with family and loved ones!

This picture was taken last July at the Cape May Lighthouse. We sure did enjoy our vacation with three of the grandchildren from Tennessee, Brandon, Ryan & Taylor. We miss them! And Billy, our son who has been away at college, will be home next month!

A Lovely Day

I actually took these pictures a few days ago, on a gorgeous day in the mid-70s.

Is there a better activity for a kid on a lovely day than climbing a tree?

Kennan came over to visit and Tomas enjoyed playing with him!

Kristin cleaned out the bunny cages--boy, did they need it!

Time to see if the slide is working!

Listen...do ya wanna know a secret?

There are more lovely days on the way!

For more pictures, click here.

Busyness

Thursday was Michele's birthday. Happy birthday again, Michele! We miss her and her family a lot, especially around the holidays and special days like these.

On Friday, Tomas's class had a Dr. Seuss birthday party. I took lots of pictures but am only going to upload this one of T because I'm not sure how the families of the other kids would feel if I had their photos online.

After the party, Linda decided to call Kennan and invite him to take T for the weekend because she said she is sick. It's good because T needs to be with his dad but we didn't get a chance to see him off and I miss him. Linda wasn't here when we got back. Where'd she go feeling so sick? The emergency room? Beats me. She still hasn't returned.

Why weren't we here? We had to go to the Greyhound in Mt. Laurel -- Billy came home from RPI yesterday for a 1 week spring break! It's so good to have him back, even for just 10 days.

Today is Linda's birthday. Happy birthday, where ever you are.

Catch Up & Wednesday Mind Hump

Finally I am starting to feel better and finally my sugar is coming down.

What else?

Linda got fired -- took too many days off, they say. She's already got some interviews lined up.

Billy got an infection in his toe from a blister that went bad. He went to the doctor right away, thank goodness, got an antibiotic and his toe is much better already. He seems to be having a good semester this time around, no engineering classes to fight with. He is going to major in physics which is about as indecipherable to me as engineering but more power to him!

Heidi hasn't gotten to practice drive too much the last week because I've been so sick but she's doing well behind the wheel and enjoys it. Yay!

And Kristin's having some trouble with her jaw still...I'm hoping that she won't have to have surgery to correct it but I guess we'll see what the doctor has to say.

Catch-up pictures on the way...

Wednesday Mind Hump

1. What is your favorite place for delivered pizza?

Soprano's ... yes, it's in New Jersey and that's really the name

2. How often do you have pizza delivered at your house?

More than once a week, there's usually someone in the house ordering pizza

3. What toppings do you want on that pizza?

Extra cheese, maybe sausage or meatballs

4. Thick crust or thin?

Thick!

Room Nana & Other Stuff

Schools reopened for the first time since our ice storm of a couple of days ago. Tomas's class was supposed to have a Valentine's Day party Wednesday. I volunteered to be the room "nana" and was planning to bring in paper products and goodies for the parties. I wondered if the party would still go on and in elementary school, kids still come first! We all had a great time!

Of course, Tomas had a total meltdown. I wasn't too surprised having been through the preschool years 3 times already but Heidi (who didn't have any class and wanted to come along) was shocked. At first, T was very delighted to see us but his mood began to go south when he realized we weren't going home. Setting up for the party totally threw him. He didn't want to sit down at the table with everyone and Heidi was whispering, "What's wrong with him? Why is he in such a bad mood?" I said it's because his routine is different: we are there, they aren't doing what they usually do, and he can't handle it all. Heidi worried that somehow she'd set the little guy off but all the teachers reassured her that this is what kids do under these circumstances and it's perfectly normal.

Tomas didn't want to do the craft, either, and threw the picture frame on the floor. We spent about 10 minutes trying to get him to pick it up but he steadfastly refused. He wanted me to pick him up and hold him and I kept saying I would after he picked up the frame. Then I felt him falling asleep and scooped him up. It's okay, said the teacher. He didn't have a nap before and was tuckered out.

I learned that this the teacher's first job and that is cool. She is very motivated and has lots of good ideas to stimulate the kids.

Tomas is going through some other changes which are kinda normal but yet not. What I mean is, he wants to dress himself independently and I remember my kids' early attempts. The difference is that T will get upset about something and we don't always know what it is. Then he refuses to let anyone put a new diaper on him or he refuses to wear pants or a shirt ... Trial and error, I figure out that there are three different patterns on the diapers and he prefers one over the other two. He wants pants that snap and zip, not track pants or pants with elastic waistbands. Shirts cannot have buttons down the front or turtle necks.

The communication issue makes it very difficult. I didn't envy Linda the last couple of days. Since school was closed, it didn't matter how long it took for T to get dressed but boy! It sure was frustrating! The socks have to be just so on his feet, have to match, and cannot be colored. The velcro straps on his shoes have to be aligned just so.

As I watch all this happen or experience it for myself, I wonder to myself how much of this is typical 3 year old stuff and how much of it is PDD-related?

I'm really glad I posted about that useless book I read because I got a comment from someone with another title to try:
Pervasive Developmental Disorder: An Altered Perspective by Barbara Quinn and Anthony Malone. This is the next book I'm going to read.

First ride on the school bus!

Today was another special morning for Tomas! Yesterday he met his school bus driver and we talked about how he'd start going to and from school on the bus. He seemed really excited about it yesterday.

This morning, right on time, here comes the bus.

Tomas was totally delighted. I started taking pictures.

Linda was working a later shift today and so she was able to walk T to the bus. It worked out great because this way I could take pictures!

That came to an end when T realized he was actually supposed to get on the bus today. "Uh uh," he said. I helped Linda get Tomas buckled into his seat. He was NOT a happy little guy anymore but I'm happy to say that his bus driver called and said as soon as we were out of sight, he was fine. Also, his teacher called and let Linda know that he was all smiles when he got off the bus. Whew!!!!!

Since June Part III

Once we had a diagnosis for Tomas, we could get him registered into a full day preschool program through the school district. That seems a lot, doesn't it, for such a little guy? Well, the thing is that T needs constant stimulation speechwise and the school has the professionals to do it. During the day, he'd be interacting not only with his teachers but also with his classmates and he'd have speech therapy and occupational therapy too.

Meanwhile, Nancy was coming to our house twice a week throughout December and into the first or second week of January. A speech therapist was coming twice a month too. I enjoyed their visits about as much as Tomas did, I think, because I picked up a lot of good tips and advice. My throat was so dry at the end of a day of talking I'd want to practically guzzle a gallon of water.

In December, Kennan came back into Tomas's life. TB and I learned, to our great shame, that we weren't given the entire truth and that Kennan really wasn't the bad guy he was made out to be. I'm not saying he is perfect, no one is, but a lot of the stuff we were told just weren't true. I was really happy when Kennan and his mom came to the house to pick up Tomas. I was able to sit down and talk with them like I hadn't before but always wanted to. Since then, Kennan's been a frequent presence--especially when the teachers were here. He was also very helpful to us getting Tomas registered in time for his 3rd birthday.

Now Tomas is in a preschool about 10 minutes from our house. He started going on his birthday, February 1, and is adjusting to it just great. The teachers there are wonderful and there are five other children. He seems to be getting along with them very well. Although the kids don’t seem to speak to each other much, all five of these children talk to the adults and they speak quite well. When I went to visit, it was like being in a regular preschool room during circle time. Tomas will get individualized attention, speech therapy 2 times a week, occupational therapy and whatever else he needs.

When he started school, he was saying “yeah”, “hey”, “ha”, “aha”, “oho” and a variation of Heidi’s name. He was also making syllabic sounds in a rhythmic pattern, as if speaking in a conversation. I notice he’s been using his voice more and more. I am so happy!

There were some days when I didn’t know how I’d get through an entire day; I would be so exhausted from talking, crawling around on the floor, and playing with the little guy. I would go from 8:30 in the morning (around when his mom would leave for work) until 2:30 almost non-stop. By then Heidi or Kristin would be around to help and I would virtually collapse for an hour. Sometimes the little guy would sleep and that would be a big help so I could catch a breather. If he didn’t, though, the hours between 4 and 7:30 (when his mom would get home) would stretch out like a long road of dry highway. My throat would be dry and sore and my joints would ache. I’d wonder how long I could keep this up.

I look back now and you know what? It’s almost like a distant memory. It was worth it, every ache, every stab of pain in a muscle or joint, every rasping dry throat from all the talking. The little guy is doing great, he’s going to do so much better and it was worth every single moment!!!!

Since June Part III

Once we had a diagnosis for Tomas, we could get him registered into a full day preschool program through the school district. That seems a lot, doesn't it, for such a little guy? Well, the thing is that T needs constant stimulation speechwise and the school has the professionals to do it. During the day, he'd be interacting not only with his teachers but also with his classmates and he'd have speech therapy and occupational therapy too.

Meanwhile, Nancy was coming to our house twice a week throughout December and into the first or second week of January. A speech therapist was coming twice a month too. I enjoyed their visits about as much as Tomas did, I think, because I picked up a lot of good tips and advice. My throat was so dry at the end of a day of talking I'd want to practically guzzle a gallon of water.

In December, Kennan came back into Tomas's life. TB and I learned, to our great shame, that we weren't given the entire truth and that Kennan really wasn't the bad guy he was made out to be. I'm not saying he is perfect, no one is, but a lot of the stuff we were told just weren't true. I was really happy when Kennan and his mom came to the house to pick up Tomas. I was able to sit down and talk with them like I hadn't before but always wanted to. Since then, Kennan's been a frequent presence--especially when the teachers were here. He was also very helpful to us getting Tomas registered in time for his 3rd birthday.

Now Tomas is in a preschool about 10 minutes from our house. He started going on his birthday, February 1, and is adjusting to it just great. The teachers there are wonderful and there are five other children. He seems to be getting along with them very well. Although the kids don’t seem to speak to each other much, all five of these children talk to the adults and they speak quite well. When I went to visit, it was like being in a regular preschool room during circle time. Tomas will get individualized attention, speech therapy 2 times a week, occupational therapy and whatever else he needs.

When he started school, he was saying “yeah”, “hey”, “ha”, “aha”, “oho” and a variation of Heidi’s name. He was also making syllabic sounds in a rhythmic pattern, as if speaking in a conversation. I notice he’s been using his voice more and more. I am so happy!

There were some days when I didn’t know how I’d get through an entire day; I would be so exhausted from talking, crawling around on the floor, and playing with the little guy. I would go from 8:30 in the morning (around when his mom would leave for work) until 2:30 almost non-stop. By then Heidi or Kristin would be around to help and I would virtually collapse for an hour. Sometimes the little guy would sleep and that would be a big help so I could catch a breather. If he didn’t, though, the hours between 4 and 7:30 (when his mom would get home) would stretch out like a long road of dry highway. My throat would be dry and sore and my joints would ache. I’d wonder how long I could keep this up.

I look back now and you know what? It’s almost like a distant memory. It was worth it, every ache, every stab of pain in a muscle or joint, every rasping dry throat from all the talking. The little guy is doing great, he’s going to do so much better and it was worth every single moment!!!!

All Those Tests & Procedures...

When the team came from the early intervention program, they guessed that one reason Tomas wasn't talking was because he'd had so many ear infections he probably hadn't heard speech normally in a long time. That seemed plausible and that's what I suspected at first. I also thought that all the trauma of his early months might be having an affect on him.

I don't want to get into issues that will cause more hard feelings so I'm going to leave out the whys of some stuff and just say that T didn't get to his post-op appointment when it was originally scheduled. TB and I made an appointment with the surgeon in August. Poor Tomas--as soon as we got in the door, he put his hands over his ears and was very anxious. I can understand why! Lots of times he'd go to the doctor with an ear infection and he'd be in pain so that couldn't be fun! Also, his eardrum ruptured in May because of an infection and the doctor at the ER had to cauterize it--that must have been an awful experience too.

Happily, the surgeon looked at Tomas's ears and said they were fine, the tubes were still in place and there was no fluid. When we explained that Tomas wasn't talking, he thought it would be best to test the little guy's hearing. We scheduled another appointment but it didn't work out. Tomas didn't want to have anything to do with the booth and hadn't begun pointing to body parts (like eyes, ears, nose, mouth) yet and so the doctor said we'd have to take him to a pediatric audiologist.

TB and I took him twice. The first time, the audiologist was able to determine through a tympanic test that everything seemed to be working in the outer ear and we were happy to hear that. When we went into the booth, though, Tomas became very anxious. He cried and fought to get out, calming down when the audiologist brought in toys. The thing was, the little guy put on his blinders again and wouldn't respond to sounds. He'd look around sometimes when the audiologist talked to him. Then he began to hide his face. The audiologist suggested we wait 2 weeks and try again. Sometimes, he explained, the child's anxiety level goes down when he knows what to expect and then they're more successful...

Except that they weren't. If anything, the audiologist got less information from Tomas than before. His gut feeling, he told us, is that Tomas could hear but he couldn't document that based on the inconsistent responses. What's next? I asked. The audiologist said the only thing left would be an automatic brain stem response. Tomas would have to be anesthesized, there would be an IV involved...and I just shuddered. No way, I thought. I was convinced that Tomas could hear, too, but I didn't think he should be subjected to trauma like that.

After that second test, I called the early intervention program back and told the director what happened. I expressed my worry that Tomas had some autistic characteristics. She was a little taken aback by that but she said it was possible and the next step should be to have him evaluated by a pediatric psychologist or neurologist. She gave me a list of names and numbers.

Every single hospital program I called had a long waiting list for an initial appointment. The shortest was 7 months and the longest 18. I couldn't believe it! I called the audiologist and he gave me the name of a psychologist who'd been affiliated with Children's Hospital in Philadelphia (CHOP) but was now in private practive. Ah, much better luck there! I got an appointment for November. The one down side was that the practice did not accept any insurance. We'd have to pay $1200 in cash up front and hope to be reimbursed later. Linda had just started a new job and couldn't take time off and so Heidi and I drove T to Pennsylvania for the appointment.

Wow, was that ever an experience! Tomas was a happy little guy on the trip, had no problem going into the office and began playing with toys. The psychologist, a very kind and knowledgeable woman, talked to me for about a half hour and then I brought Tomas in. He carried in a little playhouse and readily sat down at the little table across from the doctor. He even smiled at her and made eye contact. Things went well until she took the house away and put the first test task (a picture book) on the table. He had a total meltdown and threw the book across the room. I got him calmed down and he did come back to the table but he absolutely refused to do any language tasks. Anytime the psychologist showed him a picture or tried to use the flip book, he pitched a gigantic fit! Puzzles were a different matter. He loves puzzles and did them quite readily. He even strung beads on a string, something I'd not seen him try before.

The psychologist said to me, I don't think he's autistic. He makes good eye contact, interacts with us, and seeks out our approval for tasks completed. Her theory was that something was wrong with his hearing. I told her about the failed audiological exams and she strongly urged me to get him scheduled for that automatic brain stem response. She didn't feel comfortable making a diagnosis until she knew the results of that test because the services he qualified for would be approached in such a different manner if he was hard of hearing. I asked, what if his hearing is normal? She said she didn't think that would be the case but if so, T's delays might be emotionally based.

We got an appointment for this ABR test at CHOP for the day before Thanksgiving! That was a total nightmare. This time, Linda took the day off to come with us because the procedure was so much more complicated and involved anesthesia. You would think that being a hospital specifically for children would mean that the place would be warm, friendly and comforting. It was, sort of, except from the child-friendly waiting area we had to go to 3 different areas for one test after the other. Tomas was tired and frustratred by the time we were led back to the outpatient surgical unit. We were assigned a stark, cold room. Although Tomas was given a sedative to help calm him, when the folks came in to hook up the IV and administer the anesthesia, he began to fight like a small tiger. With six people holding him down, it took 3 big doses of anesthesia to get him under completely.

The audiologist came in after he'd fallen asleep and did the test. His hearing is perfectly fine and in the normal range.

Afterwards, the staff seemed in a hurry to get us out of there. As heavily doped up as Tomas was, they wanted him waking up after an hour--and they didn't want to take out the IV. Well, the little guy sat up abruptly, didn't recognize Heidi or me (Linda had gone out for a smoke, the first time she'd left the room since the ordeal began) and began trying to tear the IV out of his hand.

Clearly, Tomas wasn't able to walk and whenever Linda tried to carry him, he'd begin fighting and thrashing. A nurse said, this is normal, it's the anesthesia wearing off. She wanted to show Linda how to restrain Tomas and carry him out--but we thought it would be better if Tomas rested longer. I guess the insurance company must have a limit or something on how long you can stay in the room because the nurses were just determined we should go.

Tomas screamed for 20 minutes and then fell back asleep. It was one of the worst experiences I've had. The only good to come out of it was that we knew for sure that Tomas's hearing was fine.

But now what?

The school district preschool team came to the house to evaluate Tomas the end of November. I gave their psychologist a copy of the doctor's report (from PA) and she took it. Still, they tried to evaluate Tomas on the same things...and had the same results. He'd do the puzzles and toss the ball but anytime they tried to get him to get him to do a language task he'd pitch a fit. That team told me candidly that they felt T was, indeed, on the autistic spectrum and that he'd be placed in a preschool classroom with other children who have pervasive developmental disorder.

Ah well. I'd been suspecting so for a long time.

There was one more test after that, in January, and this time with a pediatrician specializing in developmental disorders and other special needs. He barely looked at Tomas, just going with the answers he got from parents Linda and Kennan. He diagnosed Tomas with pervasive developmental disorder not otherwise specified.

More later.

Since June...Part II

Once Linda gave her permission, a team from the early childhood intervention program at the hospital was able to come out and evaluate Tomas. They made observations mostly although they did ask Tomas to do some tasks. I noticed that he mostly ignored them at first. It was as if he put on blinders and turned his hearing off. At that point, it was hard to know if he was having residual hearing problems or not. When he did engage, he was so sweet and made lots of eye contact.

The team found Tomas eligible for services based on the fact that he wasn’t speaking. They also found delays in socialization skills and cognitive skills, especially since he was stuck on one type of play. He could use any toy to play this way, blocks, cars, it didn’t matter. What he would do is slide two objects open and closed and have a third pass between. After a while, TB figured out that he was mimicking automatic doors, like those at the grocery store. Those doors were a big issue—we’d go shopping and the little guy would get “stuck” at those doors. He wouldn’t want to leave them and he’d pitch a screaming tantrum when we had to move him. He would also actively resist us, TB and me, whenever we'd try to change the game. I'd build with blocks and he would scream and knock them down. He didn't want to build, he wanted to play the doors game.

The team explained what would happen next. The family would meet with members of the early intervention program and we'd come up with an individualized family service plan (IFSP). I was an interpreter in a school district for many years and so I knew this was the precursor to the individualized education plan (IEP) used for school age children to determine their needs, how to meet them, and to set goals so they could achieve. The nice thing about the infant-3 program was that the providers would come right to our house. Also the providers would be able to work with all of us and teach us how to best help Tomas. We also learned that as soon as Tomas turned 3, he'd no longer be eligible but could get into a preschool program with the school district. At the meeting, the team decided to send a teacher for Tomas twice a week and a speech therapist once every 2 weeks.

I would have preferred he get more services but hey, we'd take what we could get.

The team evaluators came in August, the meeting was in September, and services began in October.

Meanwhile, I'd done some reading up on autism and although I didn't think that was what was happening with Tomas, I had a nagging feeling that was part of it. I was signing with him but he wasn't responding. When we'd watch a TV program together, it would be "Go Diego Go" or "Dora the Explorer" or "Blue's Clues" which is interactive. And I would participate. Sometimes he didn't mind but other times he'd yell at me.

Our grandchildren from Tennessee came to visit and we were taking them places. Right away I could see that Tomas disliked Chuck E. Cheese and all the noise and commotion. He refused to try any of the rides and the only thing he seemed to enjoy was a slide in the infant section. If we went to the playground, Tomas didn't want to go on any of the equipment. He had a sort of parade route he wanted you to follow. He didn't want to get in the kiddie pool with his cousins and didn't want to go into the sandbox. He did enjoy playing with his cousin Taylor--our granddaughter is the closest to him in age.

What a dramatic improvement once the teacher began coming to the house! Nancy is a retired preschool teacher and she started out coming once a week while the program tried to find a second teacher. Nancy was scheduled the rest of the time with other kids but when December rolled around and there still wasn't a second teacher, I asked if she could come twice a week once one of her other kids "aged out". At first Tomas ignored Nancy but after a couple of sessions, he began to warm up to her.

By the time the holidays rolled around, Tomas was pointing at objects, was moving to music, somewhat interacting with “Go, Diego, Go” (the shows have the child get up and point at objects on the TV, etc) and was making some sounds that could be "yeah" and "hey". I was doing a lot of the modeling for that behavior because Linda and TB were at work and the kids were in school. Tomas would copy things if I did them first and he’d make eye contact and clap for himself. Nancy was very happy with all that and so were we!

Next: More tests for Tomas to determine a more accurate diagnosis

Since June...Part 1

Now I finally feel I can talk about what’s been going on all these months.

When we first began to visit with Tomas again over a year ago, we were kind of concerned that he wasn’t talking. He also was very reserved with us but I thought that was from the long separation. After all, he’d been through a lot emotionally and although I was hurt that he didn’t seem to remember our closeness from before I tried to understand.

The talking thing…that’s something else. Tomas had frequent ear infections during the time he lived away from us. Linda told us the doctor said his ears were filled with fluid and that’s why he couldn’t talk…because he couldn’t hear. Well, I have a nephew who had a lot of ear infections like that as a toddler and it’s true the hearing becomes impaired. Sean had tubes placed into his ears—what about tubes for Tomas? I guess they couldn’t do that until the infections cleared up and this just dragged on and on and on throughout the winter and into the spring.

Now T was over 2 years old and could not communicate with us. He would look at what he wanted and we’d try and guess what it was. If we didn’t guess right he’d become frustrated and start to tantrum. He would have some mighty tantrums, too, throwing himself against the wall and onto the floor. Now, I would have thought he would try to gesture or point to what he wanted or grab our hands but he seemed to avoid any other attempt to communicate with him. Meantime we were hearing some horror stories about what might be happening at the dad’s house and we were very worried about that.

By the time Linda brought T to live with us, he’d had tubes placed into his ears and the fluid drained away. Still…no words forthcoming, no attempts to communicate and although he could be very loving and affectionate he was also very withdrawn, rigid in his play and routines, and seemingly distrustful. I began to think, if it’s not his hearing that is keeping him from speaking obviously there’s something else going on. Could it be autism?

During this time, there was no contact with the dad. I wanted to call him but was nervous about it because of the way Linda had described him…that he hated us and wanted nothing to do with us. She said he never called her to see how his son was doing and so I wondered if he cared what was going on? Still, I often wondered what he thought about his son’s reluctance to communicate.

Over the summer, as Tomas became more used to us he became more outwardly friendly although he was still very reserved and sometimes unemotional. It was like he was wearing blinders sometimes or deaf/blind to what was going on. Communication wasn’t much better but the intensity of the tantrums decreased...

I contacted early childhood intervention programs and most were unable to act without Linda calling to make the initial request. However, I did finally get in touch with a program at a hospital that could take intake information from me. They still needed Linda to call to send an evaluation team so when she got home from work I gave her the phone and the phone number and she called.

Balancing Act

What Kind of Mom Are You?"

"Kids First Mom"

The results of The Balancing Act indicate that you are a "Kids First Mom." You are the type of mom that chooses to be very involved in your children's life and development. Although you want your children to be independent, you like to have an active role in the decisions and choices your children make. You enjoy planning activities for them to do alone or for you to share. You carefully monitor their choice of TV shows, friends, and extracurricular activities. You are the type of mom that is likely to be homeroom mother, scout leader, Sunday school teacher, or PTA president. You love to be involved all aspects of your children's life, and they love all of the fun you have together! You enjoying running them from practice to practice, fixing their lunches, and being there to welcome them off the bus when they get home from school.

Your children are the most important thing in your life. You are the type of Mom that regardless of whether or not you currently work, you would probably rather be home and a homemaker. You would be happiest being at home, spending all of your time with your children and nurturing your family. You realize that staying home may have some monetary sacrifices attached, but it would be worth it to you.

However, putting your children first can have some negative consequences. If you choose not to work, you may not have the monetary means to provide your children with certain extras like sports, dancing lessons, or scouts. Also if you are the type of mom who becomes so involved in spending so much time with her children, when your child begins to be independent, you may develop the "Who am I?" syndrome. Without your children being the center of your attention, you may have to struggle to regain your identity as a person.

Children of "Kids First" Moms are often very secure and more willing to take risks because they know they have the support of their parents behind them. They often get excellent grades in school because mom is always there to help them study or get their homework done. You really enjoy knowing what they are learning at school. Best of all -- your children are proud you are there and care so much!

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There are many resources geared to Kid's First Moms who have younger children. Younger children love being with you, and doing things with you. Children as young as 20 months can "help" pick up toys, clean cabinets, etc. Simple, educational, and fun activities are plentiful on both the Internet, and in bookstores. Other ideas include: libraries, museums, etc., that often have "story times" providing interaction for your child with other children, and also some adult interaction for you. Once your child reaches 2, there are many "Mother's Day-Out" programs that for one-three days a week for several hours, provide both interaction with other children, and a break for you.

Pre-Schoolers are also interested in being with you. As their world expands, so can the activities that you enjoy together. They can be of even more help to you around the house, Children as young as 4 can make up a bed, help with vacuuming the house, etc. There are also online activities and educational software available from approximately 3 and up. Preschoolers love crafts of all kinds, "making things", etc. Again, libraries, museums, etc., offer many programs geared to pre-schooler age, and are a great source of education and interaction with others.

Early school-aged children, while not at home with you all day any longer, also need your help and support. The habits you help them establish in their early school years will be appreciated throughout all their school years. This age child needs structure. Many kids find a well-established routine after school helpful to them. During summer months, a routine of a different nature is usually necessary and helps to ensure a "happier" summer.

These books were selected for your particular type and for excellent resources in general to help you be a better Mom. You can order them online through Online Psych and Amazon.com with complete security. Click on the title for more information (and often reviews of the book):

All Mothers Work: A Guilt Free Guide for the Stay at Home Mom, by Cindy Ramming

20 Teachable Virtues: Practical Ways to Pass on Lessons of Virtue and Character to Your Children, by Barbara C. Unell, Jerry L. Wyckoff

1001 Things to Do With Your Kids,by Caryl Waller Krueger

1001 More Things to Do With Your Kids, by Caryl Waller Krueger

Parenting A to Z : A Guide to Everything from Conception to College, by Irene M. Franck, David M. Brownstone

Parenting With Love and Logic: Teaching Children Responsibility, by Jim Fay, Foster W.

Parenting For Dummies-- the manual that we all wish our kids would have come with!, by Sandra Harding Gookin

Mom! He Hit Me: What to Do About Sibling Rivalry, by Elaine K. McEwan

Solving School Problems: Kindergarten Through Middle School by Elaine K. McEwan

So Much Stuff Going On, So Little Time To Post

We've been very busy! Here are some photo highlights from December...click on the picture for the full album!

Here's a picture of Kristin playing the sax along with other members of the band in her high school's holiday concert.

This is a shot from our Christmas Day photo album.

This is the one picture I got of Kristin just before we left for her Princeton trip. She participated in a 4 day conference, the National Young Leaders' State Conference, and she sure got a lot out of it! She made new friends and learned a lot of valuable skills

This is Kristin's birthday cake ... and I really like the fact that she's very much an individual.

Happy Birthday Kristin!

This is for my "baby" who is 15 today!

In 1992 (the year you were born)

George H.W. Bush is president of the US Hurricane "Andrew" becomes the most costly in US history with $20 billion worth of damage Arkansas Governor Bill Clinton is elected President of the United States Riots break out in Los Angeles after police are acquitted in the Rodney King case An "Earth Summit" is held in Brazil to address global environmental problems Jay Leno replaces Johnny Carson as host of the Tonight Show on NBC George H. W. Bush becomes ill on a visit in Japan and vomits on the Japanese Prime Minister Mike Tyson goes on trial charged with raping a 1991 Miss Black America Contest contestant Amy Fisher, the "Long Island Lolita," is arrested for shooting Mary Jo Buttafuoco on the front porch of her home Toronto Blue Jays win the World Series Washington Redskins win Superbowl XXVI Pisstburgh Penguins win the Stanley Cup Aladdin is the top grossing film "End of the Road" by Boyz II Men spends the most time at the top of the US charts Mad About You and The Real World premiere Sailor Moon premieres on TV Asahi in Japan

Cute

Moody Monday 's challenge this week is "cute". Who is cuter than our Tomas?

Happy Birthday to my TB

Okay, I would love to claim credit for this but I am just not a poet...but it does express my feelings! Happy birthday, sweetheart!

Merry Christmas!

Christmas Eve and the tree is dressed!

Even though the weather outside is balmy and I wish we had some good snow like the Genuine family, we still managed to get into the Christmas spirit. Kristin decorated our tree and Billy and I watched A Miracle on 34th Street.

It's never too late to start making Christmas cookies either.

To see all the pictures in our Christmas 2006 album so far, click here.

We Have Lights!

Oh boy! For the first time in years, we have lights on our house and in our yard!!!!!

I have always been a little kid about decorating the house for Christmas. The year before Rich died was the first time I think we didn't string lights all over and that was because it was just too difficult for him. I couldn't do it either with my physical limitations ... so we did just the inside of the house. After he passed, I just didn't want to that first Christmas. When TB and I got married, I thought to do up the house then but we had a shortage of outlets, were involved in blending our families (no easy matter), and it just seemed easier to just do the inside. Then TB got hurt and I just put outside lights out of my head until this year and ...

Voila! Click the picture to see the other shots in our Christmas lights album.

Also check out TB's entry.

Today is also special in that it's Oma's birthday. She is 96 years old today, God bless her!

One very special little boy...

...who is very much loved by his mommy, daddy, both sets of grandparents and both sets of extended family: aunts, uncles, cousins and so on!

Why No Regular Updates

I haven't been able to post as regularly as I used to for good reason: I have a very important job right now. I don't make any money at it but it's as rewarding as the one I had when my kids were little. When our Little T moved back in with his mom over the summer, he'd just had ear tubes put in. He'd suffered frequentl ear infections that left his ears full of fluid and we figured that's why he'd stopped talking...he couldn't hear.

At the end of summer, he still wasn't talking and so we figured we needed more help before T fell too far behind. All the states have programs to work with infants and toddlers who are delayed and so a team of really nice people came to visit and observe. That led to recommendations for more tests to figure out what's going on--or at the very least, rule out what's not.

So what we've learned so far is that T's vision is great, his tubes are still in place and working just fine, and that his hearing is within normal limits. Is he not speaking because the temporary but prolonged hearing impairment caused him not to develop the muscles he needs to make consonant sounds and so on? Maybe...

Could it be he is on the autistic spectrum? Could be...the specialists note some behaviors that indicate it.

Could it be something else? Yes...It's a mystery that's still being puzzled out.

In the meantime, though, there is a teacher and speech therapist who've been coming out to work with him and teach me how to encourage speech and communication. I say me because Linda and TB are both working now and I watch, care for and play with T during the day. This is the job I was speaking of, although I wouldn't really call it work. I love Tomas, we all do, and he is a joy and blessing to us. I love taking him places as well as just hanging out and interacting with some of the shows he loves to watch, like "Dora the Explorer", "Go Diego Go" and "Blue's Clues".

All of the things the teacher and therapist have suggested to me (and that I pass on to Linda and the rest of the family) have been really helpful! For instance, they were the ones who said to go ahead and respond to the shows on Noggin even if T doesn't. So we did and then we noticed that T began to respond as well! T does make some sounds and now he is pointing and using a couple of signs. He gets so excited when he gets his meaning across and we do too!

Yay!

Everyone says he is such a sweet and adorable little guy. He sure is!

Anyway, that's why I don't update much anymore. That's okay...I'll be back again regularly one of these days!

Backwards Update: Picking Pumpkins

The first Saturday of this month was absolutely gorgeous. It was a perfect day to go to a local farm and pick some pumpkins and go for a hayride! Tomas really got into the pumpkin picking part. He wasn't so sure about the hayride at first but I think he enjoyed it once we got underway. By the time we got back, he was definitely smiling--maybe from relief? Anyway, we all had a wonderful time!

For more pictures, click here.

Backwards Update: Trip to Troy

So much has been happening in the past couple of weeks it seemed silly to go way back there and move forward because I just don't remember as much. This past weekend, Ted, his mom, the girls and I went up to Troy to visit Billy. It was a great weekend to go--the weather was just right and the fall colors were lovely! There was a festival going on at the time so we got to see a juggler and some animals. Most important, we got to spend the day with Billy, got a couple of things for his efficiency to give him more room (a bookcase & computer desk with shelves), and did a little local sightseeing. It was wonderful!

To see more photos from our trip, click here.

Heidi Is 18

Actually, Heidi's birthday was on Tuesday but life was too hectic at the time to post about it. We took her to TGIFriday's for dinner and although she doesn't like a fuss to be made over her, she still seemed kind of pleased when our waiter and the other staff came over to noisily wish her a happy birthday!

Gosh, all my babies are growing up! Billy and Heidi are both "adults" now and Kristin isn't too far behind!

Back to School Pt. 3

Our Kristin started high school on Thursday! She suffers the curse of the younger sibling--she has teachers who remember Billy and Heidi! Another friend of hers has the same "problem". Also, it seems all the seniors remember Billy as "the kid who did karate during lunch time". I guess it's not a bad rep to have.

When the older kids went to the high school, the schedule was in the regular 8-classes-a-day format. Kristin has block scheduling. All her core classes--English, Math, Science and Social Studies are in 2 period blocks and alternate during the week. On A days, she has two of the classes and on B days she has the other two. She doesn't like it--the class time drags too much. I'm not sure what I think of it. She has health, Band (still jazzing it up on the sax!), German, and lunch every day which makes for a nice routine.

Kristin likes school so far--she is in core classes with almost all her friends and each period she has several friends. Billy and Heidi always seemed to be scheduled away from their friends so this is going to be a good year for Kristin!

She is a really cool kid and we are very proud of her.

Back to School Pt.2/More Mystery Thrillers

Today Heidi started classes at the community college. It's such a dreary day I didn't take any pictures. Sorry, kiddo--she doesn't really like to have her picture taken. On Friday, she's going to make an attempt at passing the written driving test and then we can get her lessons on the road. Soon she'll be able to drive the car she bought from Gram! Today she's got a math class--that's it. Not too bad.

I was so happy to hear from my cousin Anne. She and her husband Gil came down from Long Island to NJ so that she could attend a company conference. They arrived the day before and so TB and I met them for dinner. We had such a wonderful time. I was glad to see them again--the last time was right before I married TB so it's been more than 4 years! We're planning to go up to LI to visit them in October--after Parents weekend at RPI.

I've been so busy it's been hard to find time to read, never mind write, but I did manage to finish 3 good books recently. This summer, I wanted to keep it all "light" and so I've been reading mysteries and thrillers. I enjoyed Cabinet of Curiosities so much I decided to go back and read all of Douglas Preston & Lincoln Child's books featuring the charmingly weird Detective Pendergast. The very first one was Relic and I was not disappointed, although Pendergast was a secondary character in this one. Still, I found myself turning the pages and reluctant to put the book down until the end. What a twist--I was expecting some kind of weirdness with the killer character but certainly not what happened! A very good read.

Next, I read Life Expectancy by Dean Koontz. He is another favorite of mine because of the frequent twists and turns he takes and because of his wacky humor. This was an absolutely amazing story of two families intertwined together in a series of predictions made by a dying grandfather. Well, it was really hard to keep up with all the twists in the book but I was determined to do it because it was so good. I spent a lot of time laughing. This is a great book for someone to read who is always waiting for the other shoe to drop...that is, someone who wonders what bad thing is around the corner even when things are going well. It's a good book to read if you've got a family member with an illness and you're just not sure what's going to happen or when. I've read a review that says it's a good book to read to teach you how to cope with unexpected tragic events like 9/11--well, I don't know about that. All I know is, it's a great book. Read it!

Lastly, I read Dr. Death by Jonathan Kellerman. I'm not all that fond of the Dr. Alex Delaware character but I have several of these group of books through Paperback Swap. I'm going to read them and then pass them along. They've been just so-so, not so terrible I'm going to put it down but not so great that they'll be stories to remember. In this one, the mystery surround the murder of a doctor who's been notorious for "euthanizing" his patients--kind of a fictional Kevorkian. It turns out an obscure, never seen serial killer is the culprit and I just sort of shrugged. So it goes.

Two out of three ain't bad.

Back To School Pt. One

TB and I drove Billy back to Troy last Wednesday and today was his first day of classes. I was impressed with his efficiency apartment--he's got so much more room than he had last year!

His building isn't terribly far from his classes or from shopping. He can walk, bike or take the bus. I remember I had an efficiency in Baltimore City when I was his age and it's nice to have your own space like that. One of his roommates last year was a frequent drinker and often came in while Billy was trying to sleep. Now Billy can keep his own hours, make his own meals and go about his business. He's met some of the folks in his building--one is a foreign exchange student from Italy. Here's hoping Billy has a wonderful year!

For more pictures, go to Billy's Apartment.

Garden State Museum

What a great place to take a kid--actually, kids of all ages. TB, Heidi, Kristin and I took T to this museum yesterday and it was so much fun I think it would be well worth it to get a family membership and come back again and again!

Children's Museum

Another Chaotic Month

There have been ups and downs all month, lots of stuff going on. Tomas and Linda are living with us, part time at first and now full time. Linda's got a job and so TB and I are watching our little T when she's away. We've been to lots of places and had lots of fun and probably the best I can do is post a couple of pictures and links to the pictures in our gallery:

We went to Adventure Aquarium again last week and had another wondeful time. I know TB's been longing to tour the Battleship New Jersey and so we got combo tickets. What an impressive ship! Pictures from that day are in this album:
Day Trip

Kristin got a pair of bunnies from her best friend. She and TB worked together on building a hutch for them and then she painted it so they'd have a nice home. She did a great job--got all paint spattered!

I've been uploading albums whenever I had some spare time and here are the links for the most recent ones:

Cape May Zoo Visit

Cape May Lighthouse Visit

Natural Bridge, Virginia

Smithsonian Air & Space Museum">

Family Party

It's been a hectic couple of weeks! It's hard to believe it's been almost 2 weeks since Michele and David visited and left Brandon, Ryan and Taylor to visit with us. We started off with a party TB's mom held in honor of his brother Jon and bride Karen.

TB was the official photographer and here is a picture of the guests of honor: