Let’s spend this blog post chatting about in home therapies and alllll of the awkwardness and emotions that come along with that whole situation shall we?! I feel like it’s rarely talked about. And man, it really shakes up a home. No one prepared me for it. We just brought a new team into our home so this is fresh on my mind… we are in the middle of an adjustment period. This is a little lighter blog this week🩷

I’m the one who runs the day to day in our home. My husband works full time to support us so I can stay home and run our household. I honestly don’t know what we would have done in Elle’s earlier years if this wasn’t an option…. Or now for that matter, as I still need to be available in case she can’t make it through her already modified school day. She’s pretty consistently staying at school until 1:30!

Early. Intervention. Is. Key. I fully believe Elle is where she is in life right now and so successful because she’s been in therapies full time since being diagnosed with Autism at 22 months old. Small little bit of info- her disabilities will never get worse. And they won’t get better. They won’t go away with time. You don’t ever outgrow something like this. But- with therapies, they will give her key information on learning to live with her disabilities and stay regulated and able to function properly. By therapies, I mean speech and occupational each once a week, itinerant teacher once a week, and then full time, 35 hours a week of Aba therapy. Aba can be intense. And when I was told they’d all be coming to our home I thought, Wtf……. Do I make them snacks? Do I clean my house before they arrive? How do I reach the therapist if we are sick before they show up?Will I be judged if I have my girlfriends over for breakfast and mimosas while they are here? What if they are weirdos? Do I need to wear a bra every day when they are here?! Boooooooooo….. this blows….

Therapies quickly became life, become life. All of life. All consuming. 5 full days a week. This quickly became my full time job, managing her little life. I gave up my job and jumped in head first. Let’s fast forward to our NOW.

Elle is finding her groove. School has been drowning her since the fall. It’s been a really hard transition. She does speech and OT at school. She also does speech weekly at home over zoom still. Her speech pathologist has been just a dream to work with and Elle loves working with her. Time for Annie!! Elle was with an Aba company for 3 solid years….. after our fave therapist left, after 3 years with her full time(35 hours a week) things went down hill fast… our well oiled machine quickly turned into a train wreck. That’s the thing about this life, one day it’s finally going smooth and you think, “We are totally kicking life’s ass.” Then the next day everything is all of a sudden failing. Nothing in your bag of tricks works anymore. We parted ways with this Aba company after too many therapists came into our home and were just horrible fits for Elle. Too many inexperienced humans. And one of them just shouldn’t have been hired period….I have never felt more uncomfortable in my own home in my entire life. It was an awful feeling. The company wanted Elle to do Aba until 5-6pm week nights even though she was to attend school from 8am-1pm. Ultimately, we couldn’t and wouldn’t commit to the time, I disliked the staff, we parted ways. I hope that you parents out there will use your voice. And advocate fiercely. Always trust your gut. And know that YOU can fire people. YOU are in charge of your child’s path. And that once you find the right fit for your home and child, beautiful growth can and will happen.

The freedom was beautiful. Beautiful. Autism burnout is real. Just like being burnt out for us. She suffered from it in the past. Her daily schedule was demanding. She was on cloud nine man. Our house quickly became a free for all. And then…… she started to back slide…..she back slides even with just two weeks off from school…. everything she’d worked so hard to learn was just gone…. Poof. To be totally honest, my delusional side was like, she’s fine. With school and speech and OT, and with me knowing the Aba ropes, I can do this I told myself. It’s all fine. I’m super super involved in her care and therapies. We don’t still need to give her this much support…. Well…. Joke was on me suckers…..

She went 8 solid months being on waitlists until I was able to get her in with a new Aba company. We tried occupational therapy but the lady wasn’t a match for us. She forgot words. She was screaming a ton(still does but we are working on it). We eventually just started saying, “Don’t wake the beast.” Our house quickly learned to walk on egg shells around our girl to keep the house calm. It’s not the best way to live life if I’m being honest here. Not sustainable. And not realistic.

So here we are. We are 1 month into occupational therapy… the therapist is top freakin notch. I’m so excited to learn from her and work with her. I’ll tell you what… filling out assessments is fucking sad… we just filled out big assessment packets for anxiety, psychiatry, occupational therapy and Aba…. yes, I know my child functions for communication like a 3 year old…… yes, I think I’ll spend the day crying after checking a million boxes that are for a child much much younger then her. Yes, I know she will most likely need Aba for years to come…. So here we go again… bring on alll of the things to help our house run smoothly and help give Elle the tools to navigate the world around her.

Ok so, back to where I was. Elles doing speech now once a week at home over zoom. It’s freaking wonderful. She’s constantly saying, look behind, or beside ball mommy. It’s so damn helpful. She’s only doing Aba twice a week right now but it’s a great start. I’m very involved in all of her sessions. I have OT once a week over zoom. We come up with a weekly game plan which I implement over the next week and take data until we meet again. I also have a bi-weekly Aba parent meeting. I like to make them snacks and coffee. They can last for about 2 hours sometimes. And we just brainstorm so organically and kick so much ass for Elle. I always leave the meeting feeling so pumped and with an Amazon cart full of things to help make her life easier, or so we think. The new team consists of a BCBA and a therapist. It’s becoming clear that we’ve found a dream team…. Which is so rare… We just flow so well. We all seem to see Elle the same… which is hard to do.. it’s a beautiful collaboration we are starting to build. I’m so relieved and thankful.

I also want to say how amazing they make ME feel. I love the moto- Happy wife equals happy life… And when Mommy is happy and feeling good, my household feels that shit. In a world where I often feel so unseen and well….. just like I don’t have a purpose in life….. I feel so seen by our new team…. Every one of them… but especially our new Aba team. I was told that I’m a rare parent.. I’m super involved and willing to put in the time and work and try things to better Elle’s quality of life… that I’m great to work with… then he asked if he could take pictures of our home to share with other families. Our home is over ran with sensory toys. We have icons attached to way too many walls. (I’ll post a few pics below) Our house has been transformed into a space where Elle is safe and comfortable and can thrive. It meets all of her needs. I was stunned and wanted to cry… I felt like I was actually maybe doing life right…. Like I’m right where I should be in life. And as we all know, parenting is tough… you never know what the right thing is…… you just have to trust your gut and kick so much ass. Fake it till ya make it friends… I mean, that’s what I do so I assume everyone else on the planet does too 🤣

It’s super weird having new humans in our home again. I don’t think my husband will ever find it to be a normal situation like I do. Not going to lie, it’s odd to see full grown adult strangers playing games with your small child in your family home. A home is such a sacred space, a sanctuary really. It is for us anyways. I don’t think my son will ever not want them to play with him. It’s been around two months now of them coming over. It’s getting easier… we are finding a flow…. Elles learning new important tools to navigate life…. Yes, I’m still wearing bras… but that’s ok…

After all of Elle’s back sliding and our huge gap in services…. I totally questioned myself… I blamed myself…. I was embarrassed with myself… Therapies are something so needed for her to thrive. Even though it’s weird and uncomfortable for my life, there’s no questioning it. It’s a non negotiable. It isn’t about me. It’s about HER. We make it all happen. And I will forever make anything happen for her. Over the years, I’ve lost who I was…. My sense of self and being… But I’m making a come back, a new and better me…. This new team and season is starting to fill me with so much badassery…… a fresh fire…. and it’s fucking amazing, and it feels beautiful.

As usual, thanks for reading friends. It means the world to me. We are gearing up for a family trip to Disneyland!!! See you all next Friday for a blog post alll about how that goes for our family of 5, the prep I did, and the special passes we got for Elle… send prayers for survival 🤣🩷