As predicted, this year got away from me and my blogging/real-talk-autism-awareness-word-vomit has been very lacking. But boy, this year has been a doozy! Apologies.

Good news, Jonah finally made it through the dreaded waitlists so it’s been a heavy therapy year! He did another round of PT, had 12 weeks of OT for the first time (shout out to our main man Savuth 🥳) worked an awesome 1 week intensive DMI thanks to our amazing Erin’s connections, AND he’s currently in the middle of a 12 week intensive ABA program (Autism specific) that meets 4 days a week for 3 hours a day. ABA is the perfect environment for Jonah. He’s in a small classroom setting with 3 other classmates, each having their own dedicated ABA therapist working with them. He’s made such progress with that undivided attention and help and loves his new friends. Still has a long way to go but seeing how great it is for him makes me desperate to find that kind of support in the public school system. It sadly just doesn’t seem to exist the way it should, even though our teachers want that too. Lucky for us, Jonah has his same amazing teacher from last year and a great team to help us through the maze. Just recently we started juggling ABA in the afternoons with preschool in the mornings, so I’m running on fumes and my car seems to be running solely on a revolving “low gas” light.

It's busy, draining, ridiculously expensive and time intensive. Don’t get me wrong, that will never stop us from giving Jonah the tools he needs to grow and now is the time to be developing them. Autism is just HARD. The struggles special needs families experience daily are screaming for so much more awareness. It can be all consuming, and some days I'm just treading water. Self care needed! My MS usually stays in the backseat of my life but it's been riding shotgun and demanding to drive a lot more lately so I'm slowing down where I can. We have the best family support, and it's still too much some days. I don't know how other families without a village cope.

Jonah is such a happy guy who is FULL of endless joy; we’re also in a tough season of growth with big feelings, changes, and navigating emerging skills that aren’t easy. Every outing takes extra preparation and some of the smallest things are the hardest for him. Letting your child dip their toes into the world is daunting and when that child has Autism, it’s almost impossible. Overstimulation, constant distractions and frequent miscommunication mishaps when I'm not around to "translate" what Jonah's saying make things more challenging. His medical complexities add to it, and sometimes I forget the role they still play in some of his delays. Just the way Jonah interacts and sees this world is so contrary to most. We have to be 100% attentive in every situation big or small. Trusting others with that kind of responsibility has made me sick to my stomach many times. It’s also why I’m careful who we let into our special boy’s world. He often gets very attached to people he connects with but not everyone is the right fit and that's ok. If someone shows they don't have patience or time for our son, we just can't make time for them, especially in this season of life. He's always the priority. Our goal is to keep him surrounded by those who love and support him through the best of times as well as the meltdowns and rough circumstances, and ones that aren’t going to eventually leave him behind. We’re blessed that he’s loved so fiercely, but the fearful Mama worry always swirling around in my head is Jonah ending up alone someday. Things I can’t control, but wish I could. Thankful that God’s in charge instead of me. All parents raising children know it just takes a VILLAGE and we truly love ours. Jonah even made it through worship at church last weekend and was so loved on even while he made baby truck noises! 😂

One of my biggest hurdles is this terrible habit of feeling like I'm doing everything wrong. Like somehow hearing Jonah had a bad day is a direct reflection of my parenting. A direct reflection of myself and confirmation of my failure. I'm slowly learning that no matter how prepared I think I am or comfortable, well-rested or set for success Jonah can be for any particular event, sometimes Autism just wins. All the school and therapy in the world can't prevent a down right rough day and we all have them. I don't expect anything close to perfection from my 4 year old with developmental delays. I don't blame him when he gets overwhelmed and can't cope. So why do I blame myself? It's just hard facing the reality that even after so much work put into helping things go well, sometimes they simply don't. I also know I'm the best advocate for Jonah, I'm trying my hardest for him every day, and I understand him better than anyone. Thankful that Matthew reminds me to slow down even when it's hard to. I'm trying to find more grace for myself. Writing it down because that's not easy to do!

We have amazing people in our world who love Jonah unconditionally. Couldn’t do it without you! We’ve seen him make many strides forward this year, and even though they don’t include eating orally, he’s over 31lbs now and officially on the weight chart consistently between the 5th and 8th percentile! That old saying “fed is best” has never been more true even 4 years later; thank you g-tube inventors! He's been working his tail off this year in so many areas and I can’t wait to see how much more we’ll witness in the coming months! Trying to focus on one day at a time. It's been so fun watching him interact with new friends recently; he can't go wrong with that infectious personality of his! I know that will carry him through anything.

Also- be on the lookout for our miracle boy next month on our local stations! He’s one of the Radiothon kids this year and A LOT has changed since the first time he participated in 2019! Let’s raise some serious money for Children’s Village & our NICU! Call in during Jonah’s featured hour and let him know how supported he is! Have a great fall, I’ll do better with my updates... and finding more grace. Hopefully… ♥️