Friday, July 26, 2013

Week 19 and 20 Hep B Clearing- CEASE Therapy Update

I have been meaning to update the blog but life happens and I forget! So here is a recap of the last two weeks with the Hep B clearing.

Last week we were advised by our homeopath to dose Noah twice with the Hep B 1m. I have found that anytime we dose twice in a week we see pretty significant aggravations. And that is what happened. We did see an increase in stimming (side eyes, pacing), facial tics continued pretty strongly as well as shaking of his head, and a new behavior emerged, another stimming behavior I believe- He began to lay on the floor, and rubbed his face hard into the carpet and and he also licked the floor. Boy, that behavior really disturbed me! This was completely new and very scary! We also saw some pretty strange skin conditions pop up. He had a bad diaper rash, but when it healed it turned into eczema like dry patches. He also had little sores on his face and I noticed that he had hives that popped up one day and disappeared a few hours later. His eye contact was also poor last week. Once I informed our homeopath of these new developments she advised us to increase our dose of hep b to 10M the following week to help him "push through" what he was dealing with.

I dosed Noah with 10m on Monday and I was nervous. He was not acting like himself on Monday and was very distant, not wanting much to do with me. He looked sickly and appeared to be regressing. However, I am glad I listened to our homeopath! Boy, what a difference we have seen in Noah these past few days. We have seen a pretty significant decrease in the behaviors we were concerned about and his language continues to progress.  Now, we have a long ways to go with language but I am not going to complain at all! He is doing great with labeling and imitating words he hears. He is still working on the concept of language as a tool to communicate. He tries to sing songs when he is listening to music. He understands the concept of "more ______ please".... to request toys, food, etc. He doesn't yet call our names when he needs something- he strictly can label us-- when he sees a pictures of my husband or me he can say "dada" or "mama" but he has never used it to ask for us. I think this may be changing too. He actually came up to me today and said "mama"! He has also started saying "night night" and "good morning" as well these last few days. We are getting wonderful reports from all of his therapists on how well he is progressing. His ABA therapist says he is doing amazingly in his therapy when she takes him for circle time with other children at the center. This is such a huge change from the little boy who cried constantly when at the church nursery or Gymboree!!!! He used to have extreme anxiety but now he is present and loves being around other children.

So that is pretty much how these last few weeks have gone. I am very excited to continue on with this dose of Hep B and I am also excited about wrapping up this clearing. It has been a journey! And I am anxious to start the next clearing. I will continue to post updates regularly as we use CEASE therapy to help our son recover from autism.

Tuesday, July 16, 2013

Back In the Saddle and a Few Updates

I have had a few days to process my feelings, reflect on what occurred on Sunday and I have allowed myself time to cry... I am now ready to hop back on the saddle. I must do this. I have to press forward towards recovery and towards health and healing for Noah and for my family. I refuse to let autism rule my life or win. I refuse to allow it to take me and my family under.

In other news, I have evaluated where we are at with therapy and with interventions we are trying. We are starting to get comfortable, complacent.... Noah has been doing well, and even though we don't mean to, we start relaxing a bit when we see so much progress. I know that we have missed amping up our therapy routine and adding new, helpful interventions. The last few days I have looked through books and materials and plan to add new interventions and techniques to our daily routine with Noah. I am going to really put more of a focus on eating, bathing, self help skills and language. I will also be pulling interventions from the "verbal behavior" ABA approach.  Noah's diet is minimal and he doesn't eat many things due to his sensory problems. This is one area that we put on the "back burner" because we had so many other issues to tackle and we need to revisit it. Bathing has always been a problem... but it seems to get worse every bath we do. He used to sit in the bath for at least a few minutes and then cry until he got pulled out... now he won't even sit down. So, we must work on this and figure out a way to make him tolerate it.

Other updates: Today Noah had his first meeting with the school system to be evaluated for special education preschool. He won't have his official evaluation until September....

And thankfully, the Medicaid Waiver, has finally started covering personal care for Noah, which allows my mother to be paid by Medicaid for his care. This is huge and such a blessing. This frees up money so that we can afford ABA therapy costs. We pay almost $1000 a month for ABA, which is only 6 hours a week! We are so thankful for all of our blessings. I know the Lord is providing for us during this time.

Sunday, July 14, 2013

Days Like Today........

Days like today.... Remind me how far we still have to go and how much autism has impacted our life. I have felt so strong these last couple months and then one family get together turns me into a mess. I had to deal with family members today that don't care about what we are going through with Noah. They talked to each other about their nice normal lives never once asking us how we have been doing, or how Noah has been coming along with therapy- Not one question! Noah, even though he is more aware, cowered in a corner as they looked at him like he was a zoo animal and tried to get him to engage. His cousin who is 2 months older was talking up and storm and playing with all of his toys and communicating easily with relatives. My heart ached as I compared him to Noah (I know that I shouldn't, but I did)....In that moment, I felt as if all of our hard work and all of Noah's progress didn't seem so big after all. 

After everyone left, I cried. I wonder if our lives will ever be the same after the diagnosis of autism. I wonder if I will ever feel truly happy again. I look at pictures of myself and I don't know the person I have become. I don't even look like myself anymore... I look exhausted and depressed, where did I go? 

I feel like this family event, my birthday party (of course!), ripped away the scab where I was healing.....and I am raw.....once more. 

Friday, July 12, 2013

Week 17 and 18- Hep B 1m Clearing CEASE Therapy Update- 3 Word Phrases, Drawing, Imitation!

For week 17 and 18 we dosed Noah once per week with Hep B 1m. He continues to respond to every single dose he is given. The aggravations these past two weeks were irritability, tantrums, horrible smelling diapers and more insomnia. I also believe that he is having yeast "die offs" which may be causing some of the insomnia we have been seeing. I have observed Noah scratching frantically at his stomach and the following morning he has had very "yeasty" looking diapers. Stimming behaviors have also continued- his new favorite behavior is doing his "side eyes"... this is driving us nuts and we pray it passes quickly.

My favorite part of the post is to tell everyone reading what resulted after the aggravations.... so, the large gains we have seen these past few weeks have been the beginning of some 3 word phrases and many more two word phrases. He also started drawing this week!!!! We have worked on this daily since he was 15 months--- he had absolutely no desire to do this... and then all of a sudden he started this past week and he loves it! This last month has been huge as far as development. His language is taking off, he is imitating with ease (verbal/actions), we are doing so much better with grooming, dressing, brushing teeth, walking up and down stairs.... the list goes on and on! Of course there is still much to tackle but we are moving closer! These gains have given my family much needed encouragement and hope for Noah's future. I am so thankful for the people that are on our "team" and that the Lord has guided us to CEASE therapy. I truly believe this therapy will help us recover/heal our son.

I will continue to post regular updates as we work to recover our son from autism using CEASE therapy.