Oct 31, 2006

Revised Schedule

Sorry no photos today. The website was not allowing me to upload any pictures, so I will post haloween photos soon!

Things are getting crazy very quickly around here. Almost all of Daniel's therapy has started, and we haven't even talked to the representative about ABA yet.
ABA is the most researched and supported technique used for children with autism, and since PDD is treated the same way that autism is treated, it is the program that I would really like to get Daniel involved with. ABA is Applied Behavioral Analysis also called Early Behavioral Intervention. The results of over 20 years of extensive research is that over 50% of the kids- even some with severe autism- are fully recovered under the program. They do not call it a cure because they have not been able to pinpoint one particular cause for autism, but a full recovery means that these kids are functioning in a regular education classroom with no support and are completely indistinguishable from their peers. 100% of the children have made significant progress whether fully recovered or not. ABA by far has the most research and sound results to back it up, so I would love to start it with Daniel. The clencher is that it requires 20-40 hours a week of intense therapy- that is on top of the eight hours that he is already receiving. Sounds a bit overwhelming, huh? I'm having a hard time keeping up with the eight hours a week much less tripling that time (or more). Also it requres the parent to coordinate and find his or her own therapists. That will be the hard part. My prayer request would be that we would be able to find individuals willing to come to our house, commit for a 6-9 month period, and get paid only $8 an hour.

Oct 22, 2006

We got back from Gatlinburg last weekend, and have had a crazy week. I have included a couple of photos from our trip. We had a great time, and it was beautiful.
Daniel had tubes reinserted into his ears Tuesday morning. Everything went well although he woke up from the anesthesia mad as a hornet. They brought him to me with his IV still in his arm saying that he refused to open his eyes, and he was holding his breath in protest. He finally calmed down and we were able to leave. He was fine once we got in the van.
Therapy was normal last week, although we did get some validation in all of the hard work that we are putting into his special diet. While we were in Gatlinburg, he was obviously off of his diet simply because he would snag his cousins' milk cups or sneak a cracker with wheat. I felt like he acted much more withdrawn and he definitely tantrumed more often. It made me feel much better about the effect that his diet and routine has on his behavior and learning capacity.
Special instruction begins this week with Susan- she comes Monday afternoon for an hour this week because we are going to be out of town during her normal time on Thursday. Also, the Occupational Therapy evaluation was approved, and that will be Monday morning at his therapy center (ironically with a different Susan). He will begin OT on Wednesday at the therapy center. Hope is searching for another OT that can come to the house, but in the meantime, he will receive that therapy during Mother's Morning Out. We also have hired a second Speech Pathologist that will come to our house, so he will get two sessions a week at Kidplay Therapy Center, and one session a week at home.
Things are really picking up around here, so I will do my best to keep you all posted often. We love you all and appreciate your care and support. We don't know how we would do it without you!

Oct 11, 2006

We got Susan!

We got Susan!- try to imagine me saying that with gusto just like the song on the musical Annie, but instead of getting Annie, we got Susan!

Daniel has had a great week at "school," but the exciting news this week is that we got one of the special instructors that we were on the waiting list for. We have been on the waiting list for two special instructors that were specifically recommended by Dr. Hobbs. We thought that it would be at least mid- November before either one of them had an opening, and then we didn't know where we stood on the list, not to mention whether or not their time slot would work with our schedule. Well, Susan Sloan, who has seen Daniel at Kidsplay therapy center when she is there working with another child has an opening now at 4pm on Thursdays!!!!!!! That is an awesome time and day for us. We are so excited. She will start next week. The even better part is that she is coming to our house. I thought that we would live too far away for her to be willing to come to us, but obviously that is not a problem. Yeah!!! Susan has over 15 years experience with autistic children, so we feel really fortunate to have her working with Daniel. And, Daniel has just "taken to" her very well at Kidsplay, so no rapport with have to be built.
Y'all should have seen me doing my happy dance in the kitchen when I found out.
Okay, you can stop laughing now!!!

Oct 9, 2006

Report! Report! Report!
We finally received the psychologists' report on Daniel, so we should be moving in a positive direction soon with his therapy. Yippee!!
The report was pretty much as expected, except that Dr. Hobbs did recommend 2-3 hours of speech therapy a week and 2-3 hours of special instruction a week. We had currently only increased his speech therapy time to 1 hour per week. That leaves a lot of room, which is awesome. I would absolutely love to have Daniel in three hours of speech a week on top of all his other therapy. Hope, our fabulous service coordinator (have I ever mentioned how much we like her?), was coming today anyway to sign paperwork for the increase in speech therapy from 30 min to 1 hour a week. I promptly pointed out the 2-3 hour minimum recommendation, and she promptly started making phone calls to increase again. Aren't we both just so prompt? Hee hee. Hope is also working on lining up a special instructor to come to the house to begin one hour per week, which we will also be promptly increasing to 2-3 hours per week.
On a different note, guess who can say "shoe?" Of course I can, but so can Daniel. :) Actually it's a little more like "shhhh," but it means the item that we wear to protect our feet from cold, germs, and harsh outdoor objects. In the past month, his vocabulary has increased to about ten quasi- words with definite consistency and meaning. That is ten words in a four week period. Happy happy, joy joy!!! I can't wait to see how quickly he progresses with the increased therapy.

We went to a small pumpkin patch this week. Daniel loved the swings that were there as well as the bunny petting zoo. He also really enjoyed walking through the pumpkins being sure not to walk on any designated pathways. He only walked through the rows of pumpkins where he was not supposed to tread. Alas. It was precious, and here is a photo. Actually, I am having trouble loading a photo at this time. That just means that I will load more next time (and I really wanted to prove to you all that his eye is better). Now you will just have to wait until next time. And, for those of you who have been wanting to to post comments, I think that I now have it set up so that you can post. Give it a try. I would LOVE to hear what y'all have to say.
Ta ta for now...

Oct 5, 2006

Check out this shiner!!!!!

Daniel got into a fight with rocky Balboa during the night Monday night. He woke up with a huge shiner that just continued to worsen throughout the night. I was embarassed that I didn't really know what had happened. When he went to bed Monday evening, he had a small (very small) knot on his forehead well above his eye. He also had a small bugbite right underneath hes browline.
I did not think much of it when he woke up swollen because it did not seem to be bothering him at all. I sent him to school and he was fine. When I picked him up, I felt like it was even more swollen. I called his doc, and they could not see him. They directed me to an immediate care fascility or the ER. I just decided to give him some Benadryl and lay him down for a nap. By the time that I got him up, he could not open his eye. So at 5pm yesterday afternoon we headed out to the immediate care fascility.
I fully expected to be there for several hours. We walked in, sat down to complete our paperwork, sat in the waiting room for less than five minutes and then were taken back to our room. The doc came right in and we were out of there in half an hour. I was amazed. That was devine intervention!!!!!
He apparantly has had an allergic reaction to the bugbite that was on his eyelid. The doc gave us an antibiotic prescription just in case it worsened throughout the night. If it got any worse, that would mean that the bite was also infected, and he didn't want that infection moving into the eye. I agreed. :)
And, sorry. I just had to post two photos and one of Jonah.

Oct 2, 2006

Daniel had a great day at school (Mother's Morning Out therapy). His regular teacher was out of town, so the therapy center owner, Ms. Gretchen, was his teacher today. He actually transitioned into the classroom surprisingly well to have a "stranger" in the room. She said that she feels like she can tell a difference in him from the short amount of time that she has spent with him. That was very encouraging. She said that he is not only interacting well with her and other adults but also with the other children in his class. Yippee!!!
She scheduled his occupational Therapy evaluation for next Monday morning at 11am- hopefully we will have the approval for the eval before then; otherwise we will have to postpone. I will be able to observe the evaluation through a two way mirror. Ms. Gretchen is an OT, so she will do the eval, and she is pretty certain that he will qualify for an hour of therapy a week. I am hoping to schedule that outside of his MMO time. I hate to use the time that I am paying for for him to be in therapy. I don't mind that some, but I definitely do not want him to be in therapy the entire time that I am paying for MMO. I feel like that time should just be EXTRA instruction time on top of the approved therapy.
There is an OT at the therapy center that I really wanted to be Daniel's therapist. His name is Mr. Brent, and not only does every single child that ever lays eyes on him, LOVE him, but so do the parents. That says so much about him. Unfortunately because of funding and insurance cut backs, he is having to leave the center. I was very sad, because he was definitely my first choice. At that time though, I did not know that Ms. Gretchen was currently seeing kids as well. She is awesome, and I think that she will be our therapist. The really cool thing is that she lives about ten minutes from us, so maybe we can work out an in home therapy time.
I also talked to the psychologist who evaluated Daniel. He says that the report will be ready in about two days- only four and a half weeks later. Dr. Hobbs is really really good at what he does. He also is the typical doctor of his field who is much better at interacting with patients than he is staying on top of his paperwork. I gave him a gentle reminder, so hopefully the report will be waiting on us Wednesday morning when Daniel goes to MMO. :) Keep your fingers crossed. There are many steps in the therapy process that hinge on that report. Some things are moving forward- the extra evaluations, the special instruction (although we will be approved for more hours with the report), and the family therapy (behavioral therapy)- but other things will have to wait- the Applied Behavioral Analysis, the actual OT therapy, and the additional special instruction and speech therapy.
Right now our schedule is as follows:

  • Monday- Daniel MMO and Jonah Preschool
  • Tuesday- Jonah speech
  • Wednesday- Daniel MMO and speech, and Jonah Preschool
  • Thursday- Jonah speech
  • Friday- Jonah preschool (Daniel and I get to stay at home because Jonah carpools with a neighbor and eats lunch at school, so he leaves the house at 9am and doesn't get home until 2pm). That is almost like a full school day. :(

We have also drastically changed the boys diets. They are on a gluten free/ casein free diet. That basically means no wheat, oats, barley, rye, or dairy. I have noticed dramatic improvements in Daniel especially even with the "cheats" that have been allowed. We pretty much have to keep them completely off of any gluten and casein for three months, then the occasional slip up won't matter so much. They are also taking DMG, a supplement to aid in digestion. This seems to be helping as well. I am only introducing one supplement at a time for three to four week periods so that I can see if each one is making any difference individually. I was advised to try the DMG before trying the B6/ magnesium supplementation. A B6/ magnesium combo is one of the most effective autism treatments with drastic amounts of scientific evidence to back it up. Some people report that their children have been "cured" when starting them on B6 and magnesium together. These reports are few and far between, but I will take the 50% across the board improvement either way. :)

One last bit of miscellaneous info for today- Jonah's Developmental testing is scheduled for October 24. Please pray for us as this day approaches. I am not even going to make that prayer request specific because I don't know how I want you to pray. Just pray as the Spirit leads, and then pray that the Spirit will lead us and that we will willingly follow.

I will try to be more consistent in my blogs so that there is not so much ground to cover each time.

I am so blessed by each of you and the encouragement that you are in our lives. That sounds so trite and cliche, but you really are so important in our lives. Thank you for sharing it with us!!!!!