So it’s been a few months since I’ve written anything. And today I’m going to sum it all up in one big long post. We started 2016 knowing this was going to be a year more about us. We’ve spent the past 3 years focused on “fixing” Miss Sensory with minimal growth. We’ve had so much change in the past few months and there’s still more on the way. But here’s where we were at, what we are learning, what I wish for right now and our lowest point right now!
1. Busy is best. My typical response to no school in the past has been to plan a lot. And this summer has been just that. We are doing a day program for care for Miss Sensory 2-3 days a week, our days that she is home are jam packed with activities (mostly sports). Every day at home is themed (reading, science, math, social skills) although most days she doesn’t want to do any of the fun educational projects I’ve worked hard on. I post a visual schedule for her on the fridge so she knows what’s going on. Weekends are the worst, we usually end up just jumping in the car and going somewhere, anywhere to waste the day at least an hour away.
2. A good therapist is worth their weight in gold.
Our main psychologist of 3 years retired. We aren’t even sure what we are going to do. We had already started working with a child psychiatrist—more on that below.
3. Waiting for testing and diagnosis is like holding your breathe under water …for months. We are currently in limbo. We were referred to a child psychiatrist mentioned above in order to look at medication (I will be blogging more about this soon). Which has led us to more testing, psychological and specifically AUTISM. So…. we’ve been waiting all summer for more testing. The label may change but the symptoms are all still the same.
4. Sometimes our kids can surprise us and it’s these moments that we hold on to for a lifetime. At the beginning of summer we took a mini-vacay that my husband and I will remember the rest of our lives. We celebrated Miss Sensory’s 6th birthday with a few big bucket list items and she was unbelievably happy the entire time. This has never ever happened.
5. We as parents need to be the best selves we can be. In order to be the best we need to exercise, get to bed earlier, watch tv less, and eat better. BUT, we just want to eat pizza all the time, stay up late, relax on the sofa with some mind numbing television. This one is tough. We are tired, beyond tired. We in crisis everyday.
6. Acceptance. The place I want to get to but am still so far away from. We still wish for normal but are working toward accepting the whole picture. We went in for marriage therapy to grow better in our marriage and got told what we really need is individual therapy, given our life situation with our daughter it would be beneficial. We need to work on accepting this.
7. Change is scary. Accepting that how I wanted to parent (being a full time mom) isn’t the best situation for any of us, is one of my main goals right now. I planned my entire life to be a stay at home mom and gave up working when she was born. Since, Miss Sensory does better around everyone else except Mom and Dad this year has been a year of me trusting and letting go. This is never how I planned to parent, I planned to be present, to be with her every moment outside of school. This fall, I may be accepting a full-time position which will challenge me, stress me out and just might be the best thing for me, for her, for our family. But it’s a scary change. It’s not how I planned but what I planned isn’t working really well.
8. Tonsils and Adenoids. I hate to say it, but in a big way I’ve waited for this day. We’ve got surgery scheduled for Miss Sensory this summer. And I hate that my baby has to go through this, but I am really hoping it helps with sleep.
9. I am a therapy drop-out! I’ve completely dropped out of a lot of therapies this year, mainly Occupational Therapy and also Vision Therapy. We’ve dealt with so much health sickness this year that I just needed a break. We’ve continued with that break and we’ve survived. We’ve actually done better!! Just when you wonder how you could ever go without all the therapy appointments… you do!! And it’s a nice breathe of fresh air!
Because, this year mainly, I’d like to just be a Mom.
10. When you let your guard down things happen, not good things. We’ve had some therapists not be as concerned about security with our daughter as we have. We live with the PTSD combat kind of stress that gets talked about special needs parents have…. we are vigilant. We’ve taken some extreme measures in our house to keep Miss Sensory safe and out of things. And in the past year she hasn’t had too many destructive incidents. Until, this morning. I woke up to utter chaos, she wakes at 3-4am and usually I hear her but not today. So, I did what every good special needs parent would do, completely safety proofed my house again today and ordered alarms. I also cried my way through the day (I also blame hormones), over what I was having to do just because no just isn’t enough.