Friday, August 29, 2008

Bits and Pieces

ABA Therapy

Well, we got S's treatment plan approved, so ABA is going to start soon, hopefully next week already! I'm so excited for him! He may not think it's too fun the first few times, but I was AMAZED by what they were able to do in just the 2 days they were here doing his assessment! I think he's going to make tremendous strides very quickly. Look at me...I'm being optimistic for once! :)

The Brick Wall

Well, I hit it hard last weekend. I guess I had just been so busy with phone calls, appts, etc. that I hadn't let things sink in. Once everything was settled with insurance and ABA and I knew he'd be starting soon, it just hit me. It's not only the diagnosis, but I've also had a lot of other things going on. I started back to school on 8/25 AND E has been teething. So, sleep has been scarce. Not to mention, the constant screaming on E's part is taking me back to her colic days. Anyway, I had a "Calgon, take me away!" moment or two...then I put my big girl pants back on.

My First Day

I had my first face-to-face class last night from 5:30-9:30. It went really well and I think I'm going to enjoy it. School seems to be an 'escape' for me. If only 1 day a week for a few hours away, it really helps. Plus, the reading and assignments I do at home during naptimes and when the kids go down at night keep my mind from going a mile a minute thinking about schedules, therapies, errands, etc. I'm striving to keep that 4.0 this semester! :)

Sunday, August 24, 2008

Fun Playground Trip

We're always looking for different places to take S where he can run around and play. The other day, he drove to an elementary school in our town and pulled behind the school. We had never been there before. Can I say Holy Moly?! This playground was WAY beyond cool! I was wishing I was a kid again! This thing was HUGE (the 1st pic doesn't even do it justice)! It has forts, playhouses, sand pits, crawl-throughs...It was amazing! No one else was there, which was nice. We had the whole thing to ourselves! Of course, S started out in his usual place...running around the swingset. We did get him to actually sit on our laps on the swing this time. Of course, as soon as we pushed back to swing, he wanted down. He went down the slides a couple times. We also put him in a sand pit, which he liked. There were pictures of different animals in there, like a leopard, pink flamingo and toucan. He thought those were cool. There was also a large 'organ' type thing (in the 2nd pic) at the entrance. He would run in, play that, run out the entrance, come back and repeat. I wish school hadn't started back up now. I'd really like to take him there again. We'll have to go in the evening when D can go with us again.

Saturday, August 23, 2008

Genetic Blood Test Results

We finally got all the results back from Riley. They did a complete blood count, chromosomes, Fragile X and lead testing. Everything checked out normal! :)

Sunday, August 17, 2008

How far he's come...

I guess for those who don't know, I should elaborate a little on why/how/when I started thinking about getting S evaluated. At 9 months, he said Mama, Ball, Eat and Go. He quickly dropped Ball and Eat and only said Go occasionally. Mama, we don't think he associated with me until he was about 18 months, because he would look at a toy and say it too. He also had some 'hand flapping' although we didn't know exactly what it was. He would hold one hand up and turn it from side to side (envision a Miss America wave) and would make a car sound like he was talking to it. His eye contact was also a concern of mine. I would have to hold his head in my hands to get him to look at me, but as soon as I'd let go to do a sign or show him something, he'd be preoccupied with something else that fast. At 18 months, we had him evaluated by First Steps. My main concern at that time was his lack of verbal communication. Receptive language was not an issue. He can point to many different things in books and on flash cards, even household items that I didn't think he knew, such as lamp, mop, desk, etc. He also can point out letters of the alphabet, shapes and numbers. During his First Steps evaluation, they also noticed some motor/sensory issues he had. He seemed to not know his place in space. He could climb up the stairs, but would just want to crawl back down, not realizing that each step is lower. He would also climb on something and couldn't figure out how to get down. We had a box on our dining room floor that he liked to crawl on, but even though it was only 4-6 inches off the ground, he couldn't figure out how to get down. We had to show him how to scoot to the edge and put his feet on the floor. He's come a long way in the sensory department, in my opinion. He still has some issues with certain textures, especially on his hands. He doesn't like things like whipped cream, pudding, etc. being on his hands. Also, if he falls outside and gets grass or dirt on his hands, we've had to show him how to rub his hands together to get it off. In addition to him having Speech and Occupational Therapy once a week, we just added Developmental Therapy a couple months ago and he has just blossomed from it. I wish we would have added it sooner. All the therapists we use do floortime. It has worked wonders for him! He still uses a few signs, but he wasn't picking up on those quickly, so we decided to use a picture exchange board. He uses that to pull pictures off to let us know what he wants, but of course, those are limited. Here are just some of the signs and words he's using now:

Signs: More, All done, Help, Please, Open

Words: Mama, Dada, Doggy, Oh no (He says this quite emphatically and drawn out, like Ooooh Noooo, and uses it at all the appropriate times. I believe he got this from his Alphabet Town toy, which he loves. Whenever he misses something, it says Oh no, the correct answer is...), No (This has become quite the game. I say Yes whenever he says No. We continue for awhile until I say No, then he says something back to me in his own little language. He knows when I've changed it up on him.), I did it (Too cute! He says it when he's accomplished something and we cheer for him, but he also says it when he's done something he's not supposed to do.), All done, Go (This is normally followed by running to get his shoes or he already has them in hand and is ready to go.), Moo (When asked what the cow says), EIEI (When he wants me to sing Old McDonald), Knock knock (Before we open something. His therapist has a puzzle with doors that open and a piece inside. He has to knock before he can open it to get the piece.), Dat Dat Dat (On Little Einsteins, they say Pat Clap Pat Clap when they want Rocket to go faster), Oh Turkey (On Mickey Mouse Clubhouse when they call Oh Toodles), O, T (he says Tuh Tuh for the sound), H (he says Huh Huh for the sound)

I'm sure there are other words that I'm not remembering right now, but he's making strides in the mimicing department. I'm sure alot of the things he's saying in his own language are actually words or phrases he's trying to get out.

Our game plan is to keep First Steps until he's 3. He receives 1 hour each weekly of Developmental, Speech and Occupational Therapy through them. We're also going to start ABA Therapy soon. That will be 5 days a week, 3+ hours each day. I'm excited to get that started to see how it will affect some of his behaviors, notably throwing and screeching. I'm hopeful to learn different ways of dealing with his frustration of not being able to communicate. Once he reaches age 3, the First Steps services will stop and he'll be able to go to the developmental preschool. As long as ABA is working, we'll continue that. I'd also like to look into some additional things, like Hippatherapy (horseback riding) and swimming lessons, but we have some time for those. I think he'd really enjoy the swimming lessons. He's definitely a water boy!

Wednesday, August 13, 2008

Getting things all lined up

Well, I've been on the phone with multiple departments at our insurance company trying to figure out how to get S's ABA therapy started. No one seems to know anything about the Autism Mandate Law in Indiana or ABA therapy in general. So, I filed a complaint with the Indiana Department of Insurance this morning. Hopefully, that will put a fire under someone's pants over at Anthem. Grrrrr!

On a side note, while I'm getting therapies all lined up for S, he's just getting things lined up. It's a new 'quirk' of his. In the picture, he had taken all his magnetic letters off the fridge and was making a trail with them. He also does this with puzzle pieces and, well, just about anything else. Last night, I was running his bath water and he evidently wanted to barricade our bedroom door.

Monday, August 4, 2008

Summer semester is officially over!

This hasn't really been of the utmost importance to me recently. However, D says I should be proud of my grades, so I guess I better update. I just took 2 online classes this summer, Concepts in Mathematics and English Comp, and got A's in both, so a 4.0! Woooot! I was really dreading the English class. I hate to write! Surprised? LOL! The fall semester begins on 8/25 and I will be taking Anatomy and Physiology I, Intro to Psychology, Technical Writing and a 1 credit hour 'Life Skills' class that they make you take. I will be taking A & P face to face, but the rest will be online again.

It's a throwing day

I'm not sure what is going on, but S has decided that today is officially "Throw anything around me day". It hasn't even been when he's mad. It's almost like it's something new to do. He's thrown toys, books, his lunch and even the kitchen rugs. D's mom is staying with us for a few days this week and we're going to work on getting the house a little more organized and try to wheedle through some of his toys. His therapists suggested that we only keep a handful of toys out for him at a time. We can then 'recycle" them every couple days or so. I think this is a great idea. He won't be so overwhelmed by the abundance of toy choices he has. It will also amount to less things for him to throw. Plus, it means less clutter for me. However, this does mean that I will have to clean out a closet somewhere to put said extra toys in. Ack!

Saturday, August 2, 2008

Thanks for staring...I know he's cute.

We've had problems for quite a while taking S certain places in public, such as restaurants. He's fine as long as he is free and can run or even in the grocery store where he's in the cart and is moving. But, try to put him in a highchair or keep him contained at a table and it's showtime. So, needless to say, D and I don't go out much anymore. When we do, it's normally to city parks or walking trails where S can run and play.

Well, the city where we live just built a beautiful new playground with a splash park. He loves the water, so we decided to try it out last week. We have a baby pool for him at home, but I wasn't sure how he'd handle the sprinklers with some of the sensory issues he has. He had a great time! So, this week I thought I'd try to go with a neighbor and her kids, minus D. Bad decision. S ran straight for the water part and did well for about 5 minutes. Then he started running his patterns. I say this, because he picks a certain 'course' and runs it repetitively. He does this at home as well or anywhere really. Sometimes, he even arranges toys at home to run around. Anyway, he got bored of the water and wanted to run over to the playground. I didn't want him to do this, because his pattern there is around the swingset and there were too many kids there that day. I had to keep running after him to carry him back to the water part, screaming and hitting me all the way. When kids weren't swinging, I let him run around a few times. I watched all the other kids climbing and sliding and tried to pull S out of his course. I was able to get him to climb up and slide a couple times, then he went right back to running in circles. Unfortunately, I had to drag him away, because there were older kids swinging and he has so sense of how close things are. I was able to grab him just after a swing barely missed the top of his head. I carried him, screaming, back to the water part trying to explain to him that he can't run around the swings when other kids are on them. I tried to explain that he'd get hurt. I made sure to say these things loud enough for all the rest of parents, who were staring at me, to hear. Needless to say, my neighbor helped me to the car with E and S while I struggled getting him changed out of his wet clothes in the back of the van screaming and kicking.

Today, we just got his pool out...

Lucky to have such great friends!

After we received the news about S, within hours I received phone calls and emails from my friends. Mainly, it was to offer advice and support and let me know that I'm not alone in this. They've always been there for me. Now, I'll need them more than ever to answer my never-ending questions, I'm sure. Thank you girls! You know who you are!

S's Riley Appointment

Well, we got the news that I was fully expecting, but I was still devastated to hear. S has been diagnosed with Autism. Part of me is relieved. I knew it. It's just sad that the diagnosis is needed before he can take part in certain other therapies (he's been in First Steps since 10/07 and will remain with them until he turns 3 and goes into the school system).

Our appt with Riley Developmental Pediatrics was Wednesday July 30th at 9. The doctor said he met all the 'diagnostic criteria' for autism, but she didn't want to diagnose him without him first seeing a psychologist. WHAT?! After waiting 6 months just to get in to see you, now you're telling us this?! The wait list for a Riley psych was another 3-4 months. For something where early intervention is so critical, I couldn't believe my ears! So, I checked with our insurance and called a BUNCH of in-network providers. Alot of them wouldn't see him because he's under 3. I did find someone who is the Autism and ADD specialist in his group who just happened to have a cancellation for Thursday July 31st at 11! So, we took it. We had a neighbor watch E, so D could go to the appt with us. The psychologist observed S, asked us a ton of questions and read through the diagnostic criteria as we shook or nodded our heads at each one. At least he read them to us, that's more than Riley did. He could tell that D was extremely stressed. He asked him how he was dealing with things after first hearing the word Autism from Riley yesterday. I believe that D thought it was just a phase, something that he didn't want to deal with until someone actually gave S that diagnosis. I, on the other hand, had been preparing myself. Well, it hit him like a ton of bricks. He cried when we got out to the car. I told him it's not the end of the world. S is still S. Now it's our job to get him all the resources we can to help him out. I have good friends who have sons with autism and now we can use their expertise as well as the IN Resource Center for Autism in Bloomington to find other appropriate therapies, developmental schools, etc. besides First Steps, which we will still use until he's 3. The psychologist said he was going to be very conservative about it for D's sake. He told D that "the writing is on the wall", but that he would see S one more time in a couple weeks. He's going to get the name of a pediatrician nearby who specializes in autism. He also wants to see us all as a family or separate to deal with the shock, sadness, anger and any other issues we face as we move forward.

Riley also took blood to do some genetic testing as well as testing for lead. That was a nightmare. S has my veins. They couldn't see a good one in his arm, so they tried his hands. The poor little guy is SO strong that he had me, D and another nurse holding him down and he still managed to blow the veins. They ended up having to take him into an exam room, wrap him tightly in a sheet and take it from the side of his foot. It was traumatizing to say the least. :*( Those results should be back in a couple weeks. They also suggested we up his speech therapy through First Steps to twice a week for an hour each time, instead of just once a week.