Saturday, April 23, 2011

4/23 update

I just uploaded some random videos of Caleb. I have a ton more, and plan to record more videos to post on here when I update.

TSS started on Monday at daycare and at home. Caleb really likes flashcards. His BSC said that he is backwards because he labels things spontaneously, but will not point or show us where things are when we ask. (The labeling is usually the thing that children with langauge delays have problems with because they need to come up w/ the word themselves, instead of just hearing it and identifying.) They are starting some ABA next week.

Wednesday night we took Caleb to the Benedum Center to see Choo Choo Soul & Imagination Movers Live. He seemed to really enjoy Choo Choo Soul, but Imagination Movers was VERY loud(Even too loud for me) and they had a lot of squeeling guitars and such... so we ended up leaving part way through. I really expected it to be more like the TV show, and less like a loud concert. He started to squirm and hit. He would clap when everyone else clapped and be smiling n' happy and then just turn around and smack whoever was holding him. He also started labeling the "reckels" and "gircles" on the ceiling. We left. He enjoyed himself, but it just got to be TOO MUCH for him.

The Nutritionist came on Thursday. Caleb weighed 30lb 6oz. Which for his age is in the 50th percentile, but for his height is in the 5th percentile. She had the results from Caleb's food journal analysis --It turns out he ate right around 830 calories/day each day that his food intake was recorded. He needs around 1200 calories/day. So she gave us a can of duocal, which is a powder to add to foods that adds calories. She also gave us some pediasure to try. We have tried it in the past with no success but she wants me to try to wean him onto it... so we will see how that goes. Caleb is a very picky eater. Luckily, in the past week I have gotten him to eat steak, and macaroni & cheese (this is huge for him!) He mostly only eats, peanut butter sandwiches, yogurt, french fries, bread, and fruits(& junk of course).

I have been putting Caleb on the potty frequently and he has peed probably 20x in the potty so far (and poo'ed 1x). He knows what to do because he goes when I sit him on the potty, but he is not telling me he has to go (i have to watch for a signal which isn't always consistent either). 2 mornings in a row he woke up dry and I put him on the potty and he peed right away.

So... tomorrow is Easter. I cannot wait for Caleb to wake up and see what the Easter Bunny brought him... and watch him find all of the eggs. I did not feel like cooking this year, plus am totally not in the mood for the oh-so-typical ham. I am going to be making an "amish breakfast casserole" and that's it. We'll probably go to my Mom's for a little bit, I think she is cooking.

__right now Caleb has a plastic cup on each foot and is walking around like they're shoes. He is so silly!

Some videos of Caleb

Thursday, April 14, 2011

4/14 update

I got the letter we have been waiting on. It turns out that wraparound services weren't completely denied, they just weren't approved as requested. Its quite confusing to explain, but basically they approved everything that we want now, but June 9th they want to make a drastic reduction in the amount of hours/week he will get in the daycare setting. I talked to the lady from the place that will be providing the services, and she said that we can go ahead and get started and worry about filing an appeal for the loss in hours another time.. or just wait and see how it goes. So good news is... we should have a TSS in the daycare with him next week!
Today Caleb has pooped and peed on the floor... He will take his pants and diaper off and start to go. He has been in footed-sleepers pretty regularly because he takes his clothes off. I am starting to notice a pattern that he pulls on his diaper or takes it off when he has to GO. So as much as I didn't think he was ready to potty train yet, I am starting to think we should give it a try. I should buy him a different potty because the one we have has a detachable pee shield and he will not leave it on. I am thinking the baby bjorn potty because it has a better design(for boys) than our elmo one.
Caleb is picking up new words daily, and there are so many that I cannot even think of them all. This is great progress! He loves labeling things, shapes, numbers, and letters. The problem now is that he is still lacking functional language. He can tell you what almost anything is, he just isn't using functional words yet.
This morning he has OT and Speech. He is taking a nap right now and I am going to have to wake him soon for Early Head Start at 2. Tonight when Grandpa gets off of work, we are going to Playthings, Etc. It is a huge toy store.

Wednesday, April 13, 2011

& we're too small to stop the rain..

This morning, I was driving Caleb to daycare and thinking about things & this song came on the radio. I couldn't help but bawl my eyes out. It describes perfectly how I feel (about Caleb's current and future struggles.) Listen to it here: I Won't Let Go by Rascal Flatts It’s like a storm That cuts a path Its breaks your will It feels like that You think your lost But your not lost on your own Your not alone I will stand by you I will help you through When you’ve done all you can do If you can’t cope I will dry your eyes I will fight your fight I will hold you tight And I wont let go It hurts my heart To see you cry I know it’s dark This part of life Oh it finds us all And we’re too small To stop the rain Oh but when it rains I will stand by you I will help you through When you’ve done all you can do And you can’t cope I will dry your eyes I will fight your fight I will hold you tight And I won't let you fall Don’t be afraid to fall I’m right here to catch you I wont let you down It wont get you down Your gonna make it Yea I know you can make it Cause I will stand by you I will help you through When you’ve done all you can do And you can’t cope And I will dry your eyes I will fight your fight I will hold you tight And I won't let go Oh I’m gonna hold you And I won't let go Wont let you go No I won't

Sunday, April 10, 2011

Spring is here

It is beautiful day here in western pennsylvania... it is supposed to be almost 80 degrees today. I had big plans to go spend the day outdoors until i realized how much that is not a practical option. There is no good/safe place to go. & I would need an army to help me chase Caleb. Oh how I wish we had about a 300ft by 300ft fenced in field. Caleb could run and play all day. We could get some fresh air.. and I wouldn't be exhausted from chasing him or worrying that he is gonna end up getting hurt. So for now, I guess I will just open the windows in the bedrooms and try to get some fresh air inside.

Thursday, April 7, 2011


Guess what~ everyone was wrong! The request for wraparound service was denied by insurance. Now we must wait for a letter to come in the mail explaining why, and then appeal it. I am beyond frustrated at this point. At first it was are 3 hoops you need to jump through...then oooh here are 10 more to jump through and then you will finally get there... now that i've jumped through all of them, i have hit a big brick wall. I have had about 30 phone conversations, been to 3 dr appointments, and I don't even know how many meetings, just to get to this point & be denied. I'm frustrated, i'm exhausted... but I WILL NOT GIVE UP. (& I am sure that what they're hoping that I do) I will never give up on a battle that is worth winning, never, ever, ever.

Wednesday, April 6, 2011

30 months! Update!

Caleb had his 30month check up yesterday. He measured in at 38.5in and is 30lbs. For his age, he is in the 99th percentile for height, and 50th percentile for weight. If you compare his height with his weight he is only about the 5th percentile. The pediatrician is now onboard and agreed with the diagnosis from the psychologist she said "he definately has an autism spectrum disorder". This is a relief actually, since the last time I mentioned it she said "what makes them think that?" She told me that his right ear tube is on its way out... (he just got them placed 5 months ago) I hope he doesn't start getting ear infections again! Other then that, things looked good! As far as his weight goes, we're working on that. We just had a dietician start coming to the house and she will come monthly to monitor his weight and to help give tips on getting him to consume enough calories. Yesterday morning was the meeting to present the plan, and evidence(for lack of a better word) to the behavioral health insurance company to get approval for wraparound services. They have 48 hours to make their decision to approve it or send it to peer review. I am pretty certain there is enough proof to show that there is a definate need for the service, so I'm not too worried. I just am really hoping that it gets approved and we can have a TSS at daycare next week! (He really needs help there with langauge, social skills and behavior) I really commend the daycare staff, especially his teacher for being so patient with us while we get all of this figured out. They have been wonderful! Today my Mom and I went to the Autism Conference at Slippery Rock University. It was nice. I enjoyed hearing others perspectives on things. During the breakout sessions I chose meltdowns, and a mother's perspective through the journey. I would really like to meet more people who are going through(or have been through) this journey. I am hoping to find a social skills playgroup for Caleb and a support group.

Monday, April 4, 2011

If you know one child with know one child with Autism

I have read so many hand-outs on autism, and all those "What to look for" sheets that are handed out in doctors offices, etc... but these say so little. In fact, I just read the fact sheet from the CDC and was amazed to see that Caleb fits very few of their listed signs. This does not mean that he is not on the spectrum, he definately is --it just means that all children on the spectrum are different. I am shocked at the number of people who tell me that they don't believe my son has autism. Why is this? I think because they have a mental picture of what a person with autism acts like.. and Caleb doesn't fit it.

"If you know one child with know one child with Autism"

[I would have liked to write more, but I must get to class]