Saturday, April 26, 2008

Update on the boys

This is mainly for my M.I.L.; but anyone, feel free to read on.

Well, as many of you may already know, Jake and i have been working with Jonah at home on improving his developmental delays. Jake read a book called Behavioral Intervention for Children with Autism which introduces and teaches parents how to do ABA (Applied Behavioral Analysis) therapy with your autistic child to improve their autistic behaviors. It helps with speech, communication, reasoning, understanding.... Anyway, we of course are not educated specialists in this type of therapy, but the book has a 100 page program that isnt hard to understand and follow, and its set up for parents to do with their children at home--but it is a strict program. At first, working with Jonah wasnt so bad. He was interested and engaged in the activities we would do with him and would respond fairly well. We saw good improvements and felt confident in what we were doing with him. But now, being in our 4th week, i feel like it is almost torture working with Jonah wit this ABA therapy. Jonah doesnt like it anymore, and it gets us very frustrated each time we work with him. Its almost like he is getting bored with it--or perhaps he doesnt like the rigid way the program works (award them when they respond right, and when they dont respond right, you reinforce that they didnt get it right). We should ideally get in 4-5 hours a day of this therapy, but it just isnt realistic. With a home and another kid to take care of, we are only gettinng about 2 1/2 hours of it in a day (if even that). I have become more lazy with doing this therapy becuase i dread it so much. The problem is this therapy has been scientifically shown to be very effective in improving autistic childrens behaviors and communication, so we want to continue doing it--we do believe that it will work for Jonah if we can just keep him engaged and keep ourselves from getting impatient. What to do?? Well, we were referred to an lady here in Utah who does in home consultations and therpay using this ABA method among many other therapies. She is specilized in Special Education and Autism Intervention and we are certain she will be able to help us become better teachers. She can also come in a few times a week and work with Jonah too. Of course the fee is hefty, but we are going to try and find a way to make it work. We meet with her this Wednesday and we'll be able to get a better idea of what Jonah needs and what we can do to help him. Jonah is also in speeech therapy right now at the U of U and since we are paying for that, we will need to decide whether or not to keep it or drop it. He is doing well in speech therapy, but we arent seeing improvements there as quickly as we thought we would. Of course, it is still too early to tell (he has been doing it for only about 5 or 6 weeks) I guess we will decide after the consultation what we will do. But Jonah in general is happy and he is communicating better. He is still such a pleasant and well behaved kid and we are proud of him for the improvements he has made so far. He will say "I want" instead of "do you want" which is good. But there is still a long way to go. The challenge continues....

Toby--well, is has been almost a month since he has had tubes in his ears. The main thing we have noticed is that he doenst sleep well anymore (he used to be an AWESOME sleeper). The doctors dont understand why this is, but hopefully he will sleep better soon. He wakes up most nights crying and we can usually let him cry himself to sleep, but sometimes need to go in and pat his back so he can get back to sleep. The problem with this is it keeps me awake. My heightened preggo mom senses snap on once i hear the smallest cry from him and it sometimes keeps me up for hours even after he has fallen back asleep. Hopefully this will all stop soon. As for his ear infections, he has had one since the tubes went in. I obviously knew because of the drainiage coming from his ear and i already has the antibiotic drops to help it so that ear infection wasnt a problem. Now, we just need to work on sleeping. I NEED SLEEP!

2 comments:

Liz said...

Ember and Jake, you guys are warriors! I'm so impressed with your drive to find solutions for Jonah and your perseverance even in the face of sleep deprivation and sickness, etc. You guys are awesome! Let us know if there's anything we can do to help from afar. We love you guys and we're glad we got to hang out while we were in Utah!

Shannon said...

Hey Ember! This is Shannon (Terry) I ran into your blog from Jon and Beths- I think you are amazing that you are doing so much for your little guy! My nephew is also autistic and my brother and sister-in-law have enrolled him in all sorts of programs that really seem to be working miracles- but they were able to get grants to pay for them. I can give you phone numbers for them or email if it would help. He goes to 2 different preschools and his language skills have almost tripled just since the first of the year! Anyway- I love your blog! Your children are adorable and I laughed and laughed when I read the post about your son taking bites out of every fruit in the house. My daughter does the same thing! We are at www.lifeisbluddyawesome.blogspot.com. Talk to you later!