My view from home

It's that time of year where the weather is FINALLY decent enough to enjoy my coffee outside while watching two minions play in the pool. This past week was full of chaos, learning, advocacy, support, a little self care time, and now a cleaning frenzy after shattering my glass bottle of coffee concentrate on the kitchen floor. My husband is currently working in his garden so it's just me and the kids (and the dog) so I'm chugging this coffee like it's my last hope! This week will mark the end of the school year for us and our summer schedule will kick in not for another two weeks so coffee will be my best friend for sure!

IEP

Well we had Brayden's IEP meeting on the 10th. While it went a lot better than I was expecting, it still leaves me hanging in limbo on what to do. Either my child can attend the afternoon session with the proper paras and teacher available to assist, or my child can attend the morning session with a different para that is not trained in special education and the teacher would not be available if needed. What truly needs to happen is another special education teacher and sped paras need to be trained and hired. It's not appropriate for all children with an IEP to be forced into the afternoon session because of teacher availability. While he would definitely be more successful in the afternoon with staff that is most familiar with him and that he trusts, it may also affect his overall learning and sleep. He is most attuned and focused in the morning and his medication is set up to support him most in the AM. So over the summer, we're going to trial increasing his afternoon medication to see how that affects behaviors, sleep patterns, etc and go from there. I am also working with CLTS to cover a parent peer specialist to educate and empower me to do the right thing when it comes to a free and appropriate education law (FAPE) and the IDEA Act (Individuals with Disabilities Education Act). I'm learning a lot more politics than I ever really wanted to as I HATE politics, but when it comes to supporting your own family and helping pave the way for others, I have no choice.

Support Group

I held the very first support group meeting in our county on Saturday the 11th and while there were only three of us who attended, to me it was amazing. It was great to be able to discuss resources, struggles, successes, challenges all without any judgement or influence but speak openly about the journey we are all on. I am hoping to set up another one and continue to hold these as close to monthly as possible, though I know child care is more of a struggle during the summer along with all the vacations, etc. I hope to build this and support others as much as I can and help be a resource for other families.

Circles of Life

I was fortunate enough this past Thursday and Friday to attend the Circles of Life conference held by Family Voices of Wisconsin in Stevens Point. It is a two-day conference that has break out sessions about different topics and you can attend which ones are most fitting for you where you are at in your journey. This is meant for all disabilities, not just specific to ASD, and also has a youth gathering with it as well for children 11 and older. The breakout sessions I attended included IEP communications, creating a care map, grassroots advocacy, and one that I actually was part of a panel for: building a supportive community. I learned a lot and have a lot of work ahead of me but something I plan on creating is a care map along with possibly participating in an advocacy group (yup, more to do!)

One of the concepts I mentioned above is care-mapping and I'm including a couple examples to the left. The first one is a bit chaotic, but really, it represents our lives pretty well! The first care map represents three different children which the family decided to put all on one page, but color code it. It's something that may be ever-changing, but gives a good picture of all the members of the care team utilized in caring for a child with special needs.

The second one represents one child, but again, includes all team members and resources for the child and their family members.

These are just two ideas, but something I want to create for each child, along with a binder of all important documents, such as plan of cares, diagnosis testing results, IEP paperwork, therapy evals, etc to keep in one place and is something I can take with me when needed. There is a training available through the Children's Resource Center (care-mapping is the last component) but it's called C.A.R.E. Medical Home Series (https://crc-west-chipcogis.hub.arcgis.com/) Link is to the West region which covers the western part of Wisconsin.

It also made me realize something the healthcare system I work for and utilize for my kiddos is missing something. Other than a lack of pediatric specialties nearby and local, we are also missing what we call care coordination for pediatric patients with complex medical needs. We have it for adults to prevent hospitalizations for those with chronic health issues, why don't we have it for children who utilize multiple health teams to coordinate care across the board? I know as a parent, I'm used to having to tell our story OVER and OVER again and how he was diagnosed, what medications we have trialed, what surgeries he's had and when and can pretty much repeat it in my sleep. But that's not the point, because I am lucky to have medical knowledge and be extremely familiar with the verbiage and medical terminology used, most families aren't. Why do we not have a nurse who can help guide these families and providers and keep everything in one spot so that their pediatricians or family medicine providers have all the information needed to maintain plan of care across the board? My child may not have a visible disability, but their care is still complex and requires all team members across the specialty and primary care departments to be on the same page. I can dream right???

I had to jump right back into caregiving the minute I got home from the conference but my goal is to create a resource page on my website that will include links to various resources at least in the state of Wisconsin. It truly takes a village to raise this kiddos and reduce the amount of parent burnout and my goal is to help support other families that are experiencing this as well. Know you are not alone and please reach out if you need anything. YOU GOT THIS!!