Way To Go Eric

He was kept quite busy last weekend. Yes, this is still cheerios. But we are trying to get him used to using the spoon, and a bowl. There was a lot of crying, fussing, and tantrums at first, but he did it. Persistence pays with these boys. If we can get him to take the cheerios off the spoon, the hope is he will open up to a much larger variety of food. The sitting down part, we will take care of that in time too :-) For now, we'll take what we can get. Yeah Eric!!!

Fall Fun

Eric's therapists took him out to play in the yard last weekend. Playing in leaves is great for sensory activities. I've seen Eric hold leaves in the past, but putting his whole body in them is another story I guess.



Here was the result of that, he's otta there, fast!



He wasn't too crazy about them falling over his head either. Thankfully it was just a hand full from me.





This is more in his element. He found a baseball that his dad left here and was having a great time throwing that around. This was a great shot of him holding it.



Andy LOVED the leaves!

Adventures of Jonathan

These are pictures from late summer to present. I decided to post them here because a good number of them were taken during his therapy sessions, EHS visits and picnic, speech class, ect. The brighter spots from Wednesday's EHS home visit are included.

Jonathan

Jon has been followed by Early Head Start and Birth to 3 since he was born. With 2 brothers having extensive developmental delays and diagnosed with autism, they decided to keep a close eye on him. During the first year there seemed to be no major concerns. He had some muscle weakness and low tone, and some sensory issues but no major issues. The delays slowly started creeping in. He is now very behind in speech, at the 6-9 month age range in most areas. I've started noticing a lot more stimming behavior. He now runs around aimlessly. His response to his name, sometimes yes, mostly no now. Eye contact has become more sporatic. There is growing concern. The good news is that Jon does make more effort to interact and talk than Eric or Andy do, and he is more willing to touch different things. The feeding resistance is starting to creep in, again not as bad as his brothers but something we have to keep on top of. Yesterday I had the camera out, initially just having fun taking pictures, during Jon's Early Head Start home visit. When the focus is on Jon these behaviors become so much more apparent. Some of this may be hard to see as still images, but I'm sure most will get the idea. Here are pictures taken during that 90 minute visit, in no particular order.












He's shown some of these behaviors in the past, like the running off and lining up stuff. but some of this was new. The thing with his ear, and the stimming by his tummy in particular. The movements were odd, and quite jerky. The family advocate expressed concerns at the end of this meeting, and noted deterioration. We started discussing getting going on evaluations for Jon. I thought about it yesterday. This morning I made the phone call to CHW Child Development Center and got the process going. While I had hope we would not have to go here again, it really don't surprise me that we are. I know the process now, so we can go through this without a lot of delays or surprises. At this point, I'm ready for anything. Either we will be told that there are no issues, or we will be getting him the help he needs as early as possible. There is no way to lose with having the evaluations, although I'm pretty sure I know how this is going to turn out. Yes, I am sad and tired. But I know that we've all made it this far, and with big changes in our lives in the last year to boot. This is a familiar road, I'm informed of the process and sources of help. It will be OK no matter what happens at that eval. It's looking like this will be taking place sometime in January. I'm also going to try to resolved the insurance issues with the genetics clinic, and push for more testing to rule out anything physical, with both Andy and Jon. Three kids with similar issues should say something.

This afternoon the county caseworker for the CLTC waiver (which funds the therapy) was here for recertification for Eric and Andy. It looks like Andy will be starting therapy in February or March. She is also thinks I should qualify for more respite through family support. That would be awesome since I'm burning up most of my 6 hours a month for Jon's speech class and Dr. appointments. We were also told it would be likely that Jon would qualify for some of their programs too. I was told to give her information as the evaluation process continues. It was a long meeting, and a long , emotional day but it's all worth it. I know this is the right decision. We will see where it goes from here.

Andy Updates

Andy is doing well in school. It's been a no news is good news type deal with him. His early childhood class/4K is now an intergrated class with a regular and special ed teacher, 2 assistant teachers and more kids. The day was extended by 25 min also. I am seeing signs for "me" and "more" frequently and he is starting to make more sounds. There are the rare times I've sworn I heard a word from him, and I take it and run with it :-) He is doing much better with sitting and attending to a task now. He will also put a spoon in his mouth, until I put food on it. It's a start.

I heard last week from the supervisor from Eric's therapy provider that Andy's funding for his ABA therapy should come through by the end of this year, and could be starting therapy by January. Tomorrow the county caseworker comes, and she will know more. I'm really hoping this is correct. School is great for him, but he really needs more help so he can progress. It is hard for me to do that with 2 other kids to care for, and not much guidance from the school or anyone else. I will update this if I find out more.

Were Off and Running

When I say off and running, I mean in full force. Eric has therapy 7 days a week now. He is meeting his hours and more, no question on that. The days where he has half days of school or no school are filled with increased therapy hours. The good news is that with more hours, the more improvement there is. The bad news, it eats up a most of our family time and privacy, and it can be quite hard on Eric. On full school days they are usually here right away when he gets home, and they work with him until about 6:30 at night. By about 5:30-6pm he is very cranky and uncooperative. not that I can blame him. I would be pretty tired, cranky, hungry and ready to have my time to myself by then too! As much as I want to go upstairs and tell them to let up on him, I can't. He has to learn to hold on. It's just like I can't go up there and rescue him when he has a tantrum, they have to do their job and sometimes he isn't going to be happy about it. With all of that said, I really believe that we would not be where we are with Eric right now if we didn't take this commitment full on. He is saying so much more. He will drink out of a straw cup now. He is most of the way potty trained now (hope I don't jinx this now!). He's much more tolerant of hats, the hair clippers, and a spoon in his mouth. I may even be able to brush his teeth with toothpaste soon (he will brush well with just water, better than nothing...)! He was singing along with Madonna to "Who's That Girl" and doing a darn good job at it! I never thought I would see many of these things happen. He still has a long way to go, and we will be taking advantage of his next 2 years of intensive therapy. After his 3 years of the intensive phase are up he will go into the ongoing program until he is 18. The funding will be greatly reduced and will cover things like classes at the Y or RexPlex, horseback riding therapy, music therapy, social skills classes, very reduced ABA, ect. Part of me is looking forward to this because it will be easier on the family, but 3 years sometimes seems so short for the intensive.

We've had a change in personnel at all levels. The provider has changed the supervisor for Eric, and ultimately our family's case (Andy will be starting in a few months, don't know how that's going to be handled) Eric now has a new senior therapist since his previous one was overwhelmed with her load, and new line therapists are training in. These are all positive changes. The changeover is going quite smooth now that we are up and going after all the illness, ect.

Today's session went well until the half way point when it was time to change therapists. He had a major meltdown. I thought the second session was going to be toast until she took him outside for a while. After that, he was calm and cooperative the rest of the time, although very hungry and ready to relax after!

Free PECS symbol printouts, and more

Here are a few great sites to visit if you need PECS symbols for your child. Thank you Heidi and Claire for providing these links.
Children With Special Needs PECS downloads

do2Learn

SparkleBox

This is a great site for homeschooling, and holiday activities
Make Learning Fun

I've also taken picture of items Eric uses often and had them laminated to create personalized PECS for him. We did this for all family members to help with identification, but he learned that before they were done :-)

"Here's Your Sign"

It's starting to look like a conversation with Eric may be possible some day. He was having trouble getting his pullover jacket off. He came right up to me and said "help please".

Lately Eric has been wanting all the lights off in the house. So many times the TV and computer screen are the only light sources around here. I turn them on, he turns them off! One evening I actually wanted to read the stuff he came home from school with so I turned on the lights in the dining room, the ones on the ceiling fan. He comes by me, points up and says "off please". I finish up what I need to and turn off the lights. He says "thank you". Wow!!!

This evening the therapist told me he knew the whole alphabet in sign language. His former teacher has a hearing impaired child so this really didn't surprise me if he was taught something like this. I am surprised he remembered it all!

Last week I had Rhapsody on and I have some of Bill Envgall's stuff in my library. Anyway, one of his tracks was playing, and Eric said, at all the right times, "Here's your sign". Let me tell you that made my day.