Embracing Change: Discovering new challenges and advocating for growth.

Happy 2025! It's been awhile since I've updated everyone on our journey so thought today would be the time to do so as we are already facing challenges in the new year! Does it ever really end though?

Bennett Update:

At the end of December, Bennett completed his full neuropsych exam with Children's MN. It answered a lot of questions as to why he is still struggling so much with certain aspects of school. While he continues to still have the diagnosis of ASD and ADHD, we now get to add to the alphabet soup of diagnoses with dyslexia, dysgraphia, speech/sound disorder, and orthographic processing. Bennett is a whiz at math and numbers, but significantly struggles with reading, writing, and spelling. He's significantly behind his classmates and gets so easily frustrated when it's not right. So I am now delving into the world of dyslexia and trying to learn more about the disorder and how it affects so many things other than just spelling and writing. It's not just writing things backwards or out of sequence, it's so much more than that. I've included a couple infographics to help explain some of the diagnoses, yet I'm still learning myself and immersing myself in research, books, etc. My biggest concern of course is school. How is school fostering an inclusive education and adjusting his learning interventions to best fit what works for him? This is currently a work in progress as I am requesting to meet to discuss the various interventions they use and determine if the current one really is the best for him. Wisconsin recently enacted Act 20 which focuses on early literacy in elementary schools. This new act will increase the frequency at which the grades will evaluated on their reading/literacy abilities with hope of early intervention being the goal. I am hoping this will help keep a closer eye on kids like mine who need more assistance and intervention to show progress or change needed. But also don't be afraid to ask questions and ask for data and push for change. Schools often have multiple intervention programs as nothing is "one size fits all" and while they may be particular to one for whatever reason, it may not be the most appropriate one, so ASK questions, find out more information, ASK FOR THE DATA!! For Bennett, who is a first grader, he is at a reading rate of 17 words per minute. Expectation of a 1st grader at normal reading level by the end of 1st grade is 50-60 words per minute. We have 4 months to accomplish this in so I am pushing hard to look at what is being done and if it is truly working. While he is having some small growth, there's no way we will even be close to the standard goal by the time 1st grade is done. While I don't expect him to hit the standard goal, there should also be greater growth being seen and it's just not there. 1st and 2nd grade is the time where a strong foundation should be built for success instead of the typical "watching and waiting" only letting these kids fall further and further behind. When 3rd grade comes, it's expected that they know how to read, it's not building a foundation anymore, it's putting everything together, and if the foundation isn't there, there will be no skills building, it'll all just crumble to the ground and the child will be the one who suffers.

Brayden Update:

Where do I even start with this minion??? Looking back to where we were a year ago to now, he has grown exponentially both in behaviors, abilities, and speech. We were finally granted and approved to have our very own Augmentative Alternative Communication device (AAC). We have only had it for about a week, but I know if anything it's a back up to him to help reduce frustrations in communication. Most of the time since I am around him the most I can understand him. But there are times where even I cannot understand what it is he needs and/or wants. This device helps navigate that gray area. While we always push for speech or speech sounds, this provides him with a backup and that extra boost of confidence needed. We still struggle with behaviors and our most recent issue is hyper-fixation. We struggle to deviate our mind from a single item to where it interferes with other activities. While our therapies have been helping greatly, it's still touch and go and is often equivalent to walking on eggshells at times. You just never know what side of Jekyll & Hyde you may get, but we work through it and do our best. We did opt for a rescue medication just to have on hand in the case these meltdowns become self-injuring or last significantly long. These episodes have an exhausting effect on him and he just shuts down completely. We haven't had to use it, but just want to be able to keep him safe and not shut down.

He has started participating more with Dallas and I love watching their bond grow daily. I think a lot of it had to do with Dallas' size more than anything as he wasn't used to being around what we call a "house horse" and now that Brayden has gotten taller, he can stand his own.

Sometimes we know too much and we start going down rabbit holes. I started one recently just because of A) been watching too much Grey's Anatomy where I feel I could possibly be a neurosurgeon but also because B), the guy who cut Brayden's hair in December noted that he had some unique hair swirls. I often wondered how much research has been done in terms of brain mapping, neuron synapses, and overall brain development with kids who have been diagnosed with various levels of Autism. With the vast difference in presentation, symptoms, emotions, actions, etc. I often wonder if sometimes there's something else causing the symptoms. I brought this up to our developmental pediatrician as with the severe speech delay, the traumatic birth he had, the abnormal lines/ridges on the scalp and abnormal hair swirls, if imaging or anything would ever be warranted. I'm not looking for a cause or a cure, but always want to make sure we are putting the best foot forward to help him succeed. If there is a medical cause, I want to make sure it's not holding him back in any way. We have a follow up appointment with Neurology on February 28th so we'll be going down that rabbit hole soon and finding out more information. I tend to go down quite a few rabbit holes just because I'm curious and a constant learner.

So the take away from anything and everything over the last couple months has been to ASK questions, even if they're hard, and there is no such thing as a dumb question. We don't know what we don't ask about and it is our job as parents to be the voice for our children. If you're not sure and need support, reach out to someone, even me if you want. I will try to find any resource I can find to help support you and your family. Embrace the uniqueness and the challenges. While every day is often a challenge and many times we feel overwhelmed, stressed, feel like we're failing at parenting, etc., look back at the beginning of how far your child and your whole family has come since the start of the journey. I have learned SO MUCH not only about my children, but about myself as well. We've got this!!