I think I have three different draft blog posts going. I can’t seem to gather my thoughts together and each one is more emotional than the next. Not in a negative way; blogging is very therapeutic for me. But I can’t seem to corral the jumbled thoughts.
In light of my inability to sort through my feelings, I figured I would just share some basics about where we are with the kids and their health/education.
He’s my little puzzle still. I think he finally feels happy and settled at school. He has friends and consistency. Things work differently in Alabama than they did in Texas, so I have been adjusting to therapy offerings and IEP expectations. Currently, Eli is getting OT, PT and SLP through the school. He’s also getting outpatient PT and SLP. I feel like he could benefit from a more consistent therapy schedule in school, and the paperwork to review or look into anything takes forever. They are looking to add assistive technology to his IEP, as he’s decidedly non verbal at this point. (Though just this past weekend, he said “mama” to get my attention multiple times!! It’s been 7 months since I’ve heard his sweet voice!). We meet with his team soon to talk about kinder (I KNOW!) and what his needs are going forward.
We are also stating the process of an ASD eval. Both public and private, so we can get a better picture of what is going on. He’s completely stopped attempts at words, and his teacher agrees with me that there are days he seems “on” and engaged, and others where he’s not with us. I’ve noted this before but it’s hard to determine what comes with Down syndrome and what’s atypical. At this stage, I see so many friends who have children Eli’s age (with DS) and I just know Eli is different.
He stims, constantly hums, is anti social (though loving), and at times acts as if he cannot hear (though he can, perfectly, and doesn’t require new ear tubes!). Some other concerns are his loss of speech, reactions to large crowds or unfamiliar places, picky eating, and some sensory aversions as well as gut issues.
While we aren’t sold on “ASD”, it’s a place to start. Other possible answers are sensory processing disorder and speech apraxia. None of it really matters other than to be able to help Eli better and understand him more. It’s a lot to dive into, and most of this is going to take all year before we have answers. Right now we are going to work on limiting screen time and making sure his supplements match what his body needs.
Otherwise, Eli is doing really well. He’s a bright kiddo and we are so proud of him. His hugs are still out of this world amazing and if you’re close to him, you get to experience his awesomeness first-hand.
Goodness gracious it’s been busy for her. We got Ruby evaluated after Eli started school. Her behaviors, anxiety and general frustration had all of us very worried. She qualified for services and started a program that works with her one day a week. While she attended school, we got more evals set up through the school and university. We are waiting for the results now, but it did soothe me to be able to talk to a specialist and have some validated. My heart is so heavy and worried for her- she’s so smart and really a wonderful sweet girl…I just don’t know what to do next.
School has been a huge positive for her and she’s making gains in social aspects and emotional areas we haven’t seen before. She will begin school in the fall full-time, at the same school Eli goes to.
I still worry and I hope we can piece together something that will help her. My concern at this point is how I handle it all- I have to be honest and say that I’m worn down. I’m completely spent and emotionally bankrupt. Her extreme behaviors have just drained me and my soul is tired and weary for her. It’s been three years of trying to figure my girl out, and I know she is just as tired.
Praying for answers in the weeks ahead for my sweet girl. In the mean time, she’s been on an upward trend in the last week or so, and the sweet snuggles and smiles make my heart happy. We recently did some mommy and me pictures, and I was rewarded with the most cuddles in the history of ever. We needed that win.
This kid is a nut. A nut who will be three this Friday! It really does go by so fast…everyone warned me, but my last baby isn’t a baby anymore. My sweet Samson.
I worry for him because of all the things listed above. But he doesn’t know any different. I some times get upset and worry he will resent or feel overwhelmed by all of this. It’s a silly worry, because he’s just a typical dino-loving three year old who loves his family. He’s almost got potty training down, he’s a real ham and loves to make people laugh. Fart jokes are of special interest these days. He will be going to pre school in the fall and couldn’t be more excited about it! This kid has wanted to go to school for years, and with the other two going full-time next year, it felt like the right move.
Look for a birthday update soon 😉
I think that is about it for now. I have stayed super busy with work, pouring what’s left into all of that. And just managing the house and kids. I feel more settled than I thought I would, so that feels good. There is still a longing…a pull in my heart. But for now, I’m working to just enjoy this season and my babies.
Thanks for checking in on us!