Yesterday, I sat down and searched through my email to find the attached copy of Haidyn’s autism diagnosis from almost a year ago as of this month.
I’m not sure why but reading through the twenty page report hurt my heart even more now, a year later, than it did when I read it for the first time. Maybe it’s because I understand more of the terminology and the reasoning behind many of the behaviors and characteristics that the psychologist saw and we didn’t understand at the time. Maybe it’s because I have spent hours over the last couple of months reading books and blogs, watching movies and listening to podcasts all based on enlightening what autism is and how it works. At least, the little information that is out there about autism.
I read over the diagnostic testing and charts explaining where she fell on all of these scales as a child with autism at least ten times and then I just cried.
To say that the last three months have been easy would be a blatant lie. Her behaviors and autism “quirks” have become very aggressive, very intense and very overwhelming. Not only for her but for us as well. Melt downs were a periodic thing and I usually knew when to expect it because I knew some of her triggers. Over the last few months they have become almost a daily to multiple times a day occurrence and 90% of the time I am in a complete loss as to what the trigger may be. When she was diagnosed I didn’t see a lot of these things. I also believe I tossed a lot of “quirks” into the “that’s just a toddler thing,” category. I was wrong. She was three then and she is almost five now and as she ages these “quirks” make themselves more noticeable and less, “normal.” Also, with age the meltdowns have become more severe and far more aggressive. I now 100% understand her diagnosis, her being placed on basically a severe level of the spectrum, and being told that she would need a substantial amount of help to adjust and blossom in this world.
Haidyn has made so much progress in therapy and I am forever thankful for all of her wonderful therapists but aside from that, everything in our daily lives outside of therapy has become far more difficult than it was a year ago. I know she thrives on routine but even our routine is a constant battle.
I am not writing all of this to complain. I am writing this for our friends and family to read. I am asking for patience, love and understanding. If you pray, I am asking for your prayers. If you send vibes, I am asking for good ones.
As of right now, every day, every situation, every new place, and every get together are completely unstable for her. I used to be able to say, “oh yeah, she loves that and she will do fine.” Right now, I cannot guarantee that. Something in her brain and her little body can change so quickly for the worst and I can’t predict it.
Bare with us. We love our friends and family dearly. We still want to be invited to all of your outings, birthday parties and events. We wish to be a part of all the things that are just simple and fun for most and we enjoy it more than you know when we are able to make it work.
We may miss holiday gatherings and birthday parties. We might not do dinner as often or “parent’s night out,” but we want to. We may not make it to every church gathering or weekend vacation but we are definitely sad to miss it. Also, IF we do make it, please be patient when we have to leave sooner than expected because something changed and an exit strategy became priority.
We will always try our best to push Haidyn out of her comfort zone as much as possible to help her learn to cope and adjust to this crazy world around her but some days it is genuinely not worth the battle for her or for us. Even a simple run to the grocery store lately has ended within minutes from entering the store and sometimes just trying to bathe her at home can be a nightmare.
We love you and we miss you all. We wish we could be a part of everything and more. I know that with time she will hopefully adjust and we will also learn new ways to understand her needs and what’s going on inside of her little brain but for now we are hyper vigilant, we are tired, we are on edge and we are trying to protect her. Nothing is worth watching it physically and mentally hurt my baby in ways that I cannot fathom and without a quick fix.
So, to those that love her for exactly who she is and those that support us whole heartedly, thank you. Friends and family like you are what helps us on even the hardest days. To those that think we don’t reach out or don’t try, you’re right. We don’t but not because we don’t care. Only because in this moment our life is kind of up in the air and we are taking it day by day.
I hope and pray every single day that with time, therapy, love and a lot of patience, Haidyn and I both grow from all of this. My hope is that one day she can live a “normal” life but for now, we will take each day slowly and embrace the mess. She has humbled me in more ways than I could ever express and even though our days can be long and hard they also fill my heart with more love than you can imagine. Loving someone that is wired differently and sees/handles life on a completely different wave than you can teach you amazing things about embracing the differences, having patience with strangers and just loving others despite their flaws.
I’m not sure why God thought I was fit to be her and her sister’s Mama or why he thought I was the person to take on all that comes with Haidyn’s diagnosis but I’d like to think he’s teaching me to be a better human.
… and I’m here for it. ✨♥️