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What’s old is new.

I’ve been horrible at blogging, which I regret because I love blogging. It is very cathardic for me. A release, a place to vent my frustrations, and just really put it all out there. So I apologize now if I offend anyone, I am really just trying to be honest.

So much has transpired in 3 months.

Max completed 12 weeks in the St. George Brain Balance Center

It was a huge undertaking and accomplishment for all of us! We saw him gain so much:

He is more aware of his body(which give me high hopes for potty training) and wants to climb, and pays more attention to people walking around him.

I can tell he is understanding language so much better.  He focuses on what I am saying, he studies my facial expressions, he searches to know what I am pointing at or asking him to do. It is truly amazing for me to watch him transform.

He is using what language he does have much more deliberately. It is still mostly one word at a time, but he does have some phrases under his belt as well. However, I think he uses them as one word even though they are 3(i.e. let’s go outside=lessgoside, I want some chicken=wansomchicken, I want to get down=wangetdown), but this mimicking and word association has much more complexity, so I consider that progress in the right direction.

85% of the time he responds immediately when I call his name. This is huge, because I can have him walk around with me in public and trust that he will listen and respond to my instructions. He seems to have gotten better control over his impulse to run toward what he wants and he periodically checks to see where I am at the park, although he still doesn’t have an understanding of danger or a sense of being lost.

He is associating a lot of language with social interaction and taking initiative to say it on his own without parroting!! I have heard him say “bye”, “goodnight”, and “hello” all in proper context without promptings from me. HUGE!! and to think a year ago at this time he couldn’t speak at ALL! I am astounded at the progress he has made in a year and I attribute much of it to Brain Balance.

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Dempsey loved playing in the Brain Balance lobby while we waited for Max to finish his session.

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Once, at one of his first sessions Max fell and hit his face and nose right on a grip of the climbing wall. He had a fat lip for about a week and I thought he wouldn’t want to go back, but once he calmed down he was fine. He loved going to his sessions so much. He was always so happy and excited to work with the girls there. You would never even know that it was therapy.  To this day, when he gets really upset he still has a little scar under his nose that turns red.
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Dempsey has come a long way, not only in the last 3 months, but just in the last 3 weeks!  Overall she has been a lot more challenging than Max. Up to this point she has been completely non-verbal. There is some parroting, but no meaningful verbal communication. She can go into a tantrum at the drop of a hat. She hates going to the grocery store, or any store for that matter. I’m pretty sure it is the fact that she is confined to a cart and I don’t allow her to explore. I immediately have to grab a bag of organic potato chips or GFCF cookies to keep her content for a short window while I grab a few things, and at the same time making sure Max isn’t wandering off or getting in other people’s way. It is very draining to take them anywhere by myself, and while I will do it, I try to avoid and have become somewhat of a hermit.  While Dempsey has many similarities to Max, many of her sensory issues are different. You’ll find her covering her eyes and ears a lot more when she gets over-stimulated. She still walks on her toes in order to engage her muscles and feel her body in space, but we know with more exercise she can over come that.  She seriously struggles with her palmer reflex. She can’t do “popcorn popping” or a bump-five hand motion, so in order for her to work through it I have her squeeze and smash playdough.

The past couple of weeks we got back to doing exercises with them, which we had neglected since our move to Vernal. This is Dempsey’s first experience with the exercises and I was so apprehensive about how she would do, because she is very strong-willed, resistant, and downright fiesty! I decided I needed to conquer my fear of my now 3-year-old daughter and just dive in, because I cannot go on letting her think that she is in control…
so I had Adam work with her first. hehe.

She actually responded better than we thought. It wasn’t perfect form and technique, but it was a start and we could see that with time and consistency she would be able to catch on and build the endurance and attention span. After just two weeks of working with both of them 2-3 times a day for about 20-30min sessions we can tell that they are just all around more calm and content. They are able to focus more during the day. I am trying my best to limit screen time and sugar. I can just tell a difference in Dempsey being more present.

She is understanding more of what I am saying to her(receptive language), which a huge precursor to her being able to speak back(expressive language).  I hear her singing Frosty the Snowman and Twinkle Twinkle Little Star, she loves music.  I see her slowly turning a corner with her language(we’re talking 2mph here–snails pace), but any change is good change! There have been times when I have been so frustrated with her, because I don’t know if her tantrum is something she can’t help developmentally or if it is purely frustration because she is really trying to tell me something and she can’t get it out.

 

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They both had their birthdays and turned 3 and 4.  I can’t believe how big they are getting.  It’s comes with excitement and a whole new set of challenges. I love seeing them grow, change and progress.  There are still so many things about them that are true to their age. However, I have been feeling lately as they are moving away from being toddlers, they cannot get away with immature behaviors seen as “cute” and “baby-like” before. I am beginning to encounter disgusted looks from strangers when they have tantrums in public and when I try to explain that they have autism I am starting to get those who find it necessary to give me unsolicited advice on how to control their behavior or teach them to talk. I have a slight realization that I will have to go through this at each stage of their life. There will be new challenges for them and me and I have to emotionally prepare myself.

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As I briefly mentioned above, we moved.
During the summer we found ourselves in a familiar place…at the end of our rope.
Adam had finished his MBA in an astonishing 6 months and then made the transition from blue collar to white collar and tried his hand at being a loan officer. Although we loved the company and they were very good to us, we just didn’t feel like our future was in St. George.  After a trip to visit my parents and talking with a few people in town, Adam told me that he really felt like moving back to my hometown what the right thing to do.
I bawled.

I had mixed emotions about moving back to Vernal. Of course, I wanted to be closer to my family, but I was scared to death that I would be isolated from the resources that Max and Dempsey needed. I also had some irrational fear that moving back to my hometown meant reverting back to the person I was 20 years ago and I didn’t want to face that.  Adam moved up first because he started a 9-month program in Petroleum Technology. I stayed behind in St. George for 6 weeks, because Max was right in the middle of his 12-week course at Brain Balance.  Luckily, I had Lindsay there to help me. It was tough being a single parent of 2 with autism.

We went at least 3 times a week to jumpin’ jacks, splash parks, the gym, preschool was 4 days a week hallelujah, and brain balance.

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I didn’t see Adam for a whole month and I finally got to see him for my birthday.  I tortured him and made him take me to a vegan restaurant, because I had been cleaning up my eating along with the kiddos and wanted to try it.  It was….ok.

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We’ve been in Vernal for about 2 month now.
I love having my family nearby.
I love being able to reach out to good friends more often and having a support system.
Our ward has been very understanding of Max and Dempsey.
Adam is doing great in his program and we see so much opportunity for the furture!

However,
It’s freezing and dreary.
Although the preschool here is doing a good job, I still miss the St. George system fiercely.
It is tough to find the food I need for their diets, it’s expensive, or I have just run into horrible service when trying to order through grocery stores.
There is an overall lack of activities for special needs kids in the community, be it public or private. The state preschool is pretty much it…

 

Phew…that has been the last 3 months in a nutshell.  Mostly the good, but some bad and ugly too.
Looking forward with optimism.