Progress

The first couple of hours of each day usually consists of me in the office doing “autism admin”, aka paperwork, emails, phone calls, follow up, etc. This morning as I was getting some paperwork together to fax to the insurance company, I stumbled upon the Developmental Evaluation they did on Kaden back on April 1. It was barely 3 months ago, but feels like an eternity ago! As I read through it, I was just amazed at the progress Kaden has made in such a short amount of time. If I did not know better, I would not even think it was the same kid!

After I sat and reflected for a few minutes, I decided that I would take Kaden to his Sensory Integration Class at Early Learning Institute in Rohnert Park. Since Dave has been off he has been taking Kaden, which has been GREAT for the both of them. It really isn’t ideal for all of us to go, as any extra energy (people) in the room can become extremely overwhelming very quickly. Even though there are only about 4 kids in this class, they are all “sensory” kids which is probably equivalent to about 25 neuro-typical two year olds in one small room.

Anyhow, it was great to check back in with the therapists who run the class. They all connect with Kaden’s other therapists who work with him on a weekly basis, so they are all on the same page. It was really cool to see how much he has improved in just the 6 weeks he has been attending this class. His progress really becomes evident amongst his peers! The first day I brought him, he was very withdrawn and just wanted to do his own thing. Yesterday he was engaged, playing with others, and even fighting over toys. Yes, I am happy about the fact that my two year old is fighting over toys….this means that he actually cares what is going on around him! His brain is waking up and he is spending less and less time withdrawn in his own little world. This is HUGE!!!!

Not only was I impressed with that Kaden spent most of the class interacting with the other kids, but he also showed me how much more communication he is truly capable of these days. He was signing like crazy for the therapists, taking their hands and showing them what he wanted, and pointing. He does this sometimes at home, but not consistently so it was cool to see that he is able to communicate in a social situation to get his needs met.

These past few months have been a roller coaster of emotion, stress and frustration. But through it all we have managed to make a lot of changes to better Kaden, and make him healthier. He is now going strong on all of his therapy….ABA (Behavioral Therapy), Speech Therapy, Occupational Therapy and Sensory Integration Therapy. We have implemented some of the most challenging and intensive diet changes I could imagine, and have stayed consistent. He is taking all of his supplements daily. Due to all of this, Kaden has made tremendous gains and is now more in-sync than ever with his peers and family.

No, he is still not talking and we still have a very long road ahead. Every gain, large or small, will be hard-fought. But I can’t help but recognize how responsive he has been to all of the changes we have implemented thus far, and be so proud of how far he has already come! He really is an amazing little guy and I am so proud to be his mommy!

Awarness

"I have autism. When I am out on the playground, never say to my mother, "I would never have guessed that; he looks so normal" The face of autism is not a defined one."
~ Tonya Procor, a loving mother to a son with autism


More and more these days, I find myself struggling to explain autism to people. There are so many pieces to autism, and it looks so different on every child who is affected by it. So, I focus on the pieces which affect Kaden, but I still find myself searching for the most simple way to explain it without completely confusing people.

Kaden really struggles with some sensory issues, as do a lot of kids on the spectrum. If I thought explaining autism was hard, trying to explain the sensory component of it is even more difficult. More often than not I just get the "deer in headlights" look from people as I try and describe Kaden's sensory issues, or sensory seeking behaviors. Half of the time people look at me as if this is something I am making up. I wish it were, but it is in fact very real and strongly affects Kaden and his ability to learn.

Three months ago, I would have been the same way. I have to constantly remind myself that not everyone has spent every free second of their time reading, talking to people, and researching sensory issues and autism. My goal with this blog is to keep everyone updated on Kaden's progress as we continue on this journey with autism. But also, to bring a little more awareness to a topic that not only has a direct impact on Kaden, but also affects millions of other kids and their ability to live & function in this world the same way that you and I are able to.

With all of that being said, Kaden had a wonderful week last week as he started his Occupational Therapy. We were not sure if it would be too overwhelming for him, as he had his Sensory Integration class in the morning for 1.5 hours, and then OT for an hour in the afternoon. He did great. Mundi introduced the weighted blanket, which he believes will help Kaden be able to be in a "calm-alert" more often. I know, this probably sounds really crazy!

Sensory Processing Disorder can be described as an inability of the brain to process the information received from all of the senses at the same time and make meaningful and socially appropriate responses. Sensory Processing is critical in regulating one’s activity level, emotional state and state of alertness.

So, deep pressure from weighted products can be beneficial in calming and modulating the brains’ ability to filter the overwhelming stimuli from the senses. Pressure through the use of weighted materials has been effective in helping people achieve that “just right” state of being calm and alert.

We spent the week trying to get him used to the weighted blanket; hiding things under it and making him find them, pulling him around as he sat on it, playing on it, and any other way we could incorporate it in his day.

This week will get even busier for Kaden, as he will begin his Behavioral Therapy in addition to everything else. So far it has all been very positive and he gets excited when he sees his therapists. They are all very happy with the way he is responding and this means progress!!!

Sorry if this was a lot of information, welcome to my world! HA HA! The more we learn about Kaden and the challenges he faces, the more we can better help him to grow. Thank you to all of our friends and family who have made an effort to learn about autism and all that it entails. Just taking the time to read our blog will help benefit Kaden in the long run!

Have a great week!!!

The "A" Word

Although I have known it in my heart for a couple of months now, we finally have an official diagnosis for Kaden. Yes, he has autism.

We have definitely tip-toed around the "A" word since this all began, mostly because we did not know for sure. So many little one's his age are diagnosed with PDD-NOS (Persuasive Developmental Disorder) and not diagnosed with autism until they are a little older. Kaden met all of the criteria to receive a full autism diagnosis. I know, a lot of you are probably reading this thinking "ahhhh man, that sucks!" But trust me, this is actually a good thing.

Of course i'm not jumping for joy and celebrating the fact that my son was diagnosed with autism. I don't think any parent dreams of having a child that is anything other than neuro-typical (that's what we call "normal" in the world of autism). But, I have accepted it and gone into "mommy" mode. I realize that I am Kaden's biggest advocate now, and always will be. As another mom to a child of autism told me when we were first starting this journey, "you are the one driving this ship, but you will also Kaden's safe harbor." It is important for us to remember that now that he has a diagnosis, so many doors will open up to get him the continued treatment and services that he needs to grow & develop.

So now, we are on a journey to recover Kaden from autism. And yes, I believe it can be done. I don't care how many people look at me like I am crazy for changing his diet so drastically, or think i'm being extreme by giving him supplements. He is physically healthy, and we have seen nothing other than positive results thus far. When it comes to your child, you are willing to try almost anything if there is even the slightest chance it could work, and of course as long it is safe for him.

With Kaden's diagnosis came some very positive feedback from Dr.Ross (Developmental Pediatrician). Below are the areas of concern, but she said she feels he is cognitively where he should be and very bright. She said that will be key in is ability to recover. I decided to share a few things from the diagnosis report because people are constantly asking me how they could possibly diagnose so young and what exactly are they looking for. So, here are the areas of concern for Kaden:

• 1(a) Marked impairment in the use of multiple nonverbal behaviors such as eye-to- eye gaze, facial expression, body postures & gestures to regulate social interaction.

• 1(b) Failure to develop peer relationships appropriate to development level.

• 1(c) Lack of spontaneous seeking to share enjoyment, interests or achievements with other people.

• 1(d) Lack of social or emotional reciprocity

• 2(a) Delay in or lack of development of spoken language

• 2(c) Stereotyped and repetitive use of language or idiosyncratic language

• 3(d) Persistent preoccupation with parts of objects

It is amazing to me when I think about all of the positive changes we have seen in Kaden over the last 5 weeks, since we have changed his diet. My mom and I were just talking about this the other day. Here are some of the changes we have seen since Kaden has been on the GFCF/FG diet:

• He makes eye contact more (you can actually get him to do it now)
• He points at things and people
• He follows most two word commands
• He is present and connected in a way he wasn't before
• He is calm most of the time (within reason for a two year old)
• He makes so many more sounds

These are just some of the profound changes we are seeing in him. By next week he will be going on all of his therapy and his next IFSP is in September. I can't wait to sit down with his team of therapists in September and reflect on all of his accomplishments. They have set some hefty goals for him, but Kaden is an amazingly determined little boy and I know he will do great!


Have a wonderful weekend!