Soundtrack for the post as you read, if you are so inclined:
- Sia – Elastic Hearat
- Moby – Natural Blues
- Jason Mraz – Living in the Moment in honor of Amber
I will start off this post super transparent and honest: Life has been shit lately. There have been great moments in between all the not so fun moments, yes, and that is what keeps me going; overall though, life has been shit. That is hard for me to admit, openly and in this space. I am not a negative person nor do I like to focus on the negative, but lately, that is all that has been thrown our way (which if you are like me, makes it harder and harder and harder to stay positive). I firmly believe that in order to get through that, we have to acknowledge it. If we don’t acknowledge it, it will just continue to fester under the surface. I am also keeping in mind the great advice that my dear friend Adam Hayden gave me when starting this blog and that is “to keep telling the truth”. So here’s my truth as of late.
We, along with the hardworking, caring, persistent staff at the University of Washington, and my Employer, have been fighting our insurance for the last month to get them to admit that yes, we do indeed have ABA Therapy coverage (we’ve had it covered since January as luck would have it) and yes, we are approved to start ABA Therapy for Desmond 2 hours a day, 5 days a week. In fact, it’s legally required to be covered in the state of Ohio, where my Employer (and therefore my insurance) is based. It took a full month of multiple people fighting for my son, fighting for us. A month of phone calls, emails, countless meetings (all with myself, my Employer, the Insurance Broker, the Patient Coordinator at UW, etc.). That alone is exhausting. At the same time, how freaking lucky are we that we have that kind of support not only from UW but also from our Employer? Everything feels so overwhelming at times that I constantly have to remind myself of the good in each moment, just like in this moment.
There has been a lot going on at work, most of which I cannot get into, but suffice it to say, my work life balance is totally off kilter lately as we are making a lot of transitions out here in our Seattle office. I have been working around 50 hours a week for the last two months while also remaining available and on call as needed. Adam and I are also wrapping up our 10th or 11th (I’ve lost count) appointment at UW for ABA Parent Coaching. This is something that the wonderful people of UW offered to us as a means to get Adam and I up to speed on ABA Therapy, how it might look for Desmond, and get a head start practicing the tools at home, while we were all busy fighting the insurance company to verify coverage for Desmond’s specific ABA Therapy. This has been on top of Desmond’s OT and Special Education therapies that he already has set up through the week. In scheduling out our calendar for the next two weeks, I realized that I had never scheduled his 18 month wellness appointment; in the midst of all of this chaos, we’ve only had time to focus on two things: Work. Autism. Go to sleep, repeat. That’s it. I had to spend 30 minutes on the phone with the Pediatrician’s office just last week trying to find a time that would work with all the therapy schedules, not fall into the middle of nap time, and still allow us to be able to go to work. Dealing with all of that right now has left me completely and utterly imbalanced, exhausted, and overwhelmed.
Then, we lost our dear friend and cousin Amber Hafer, as you might have seen on Facebook. It was completely unexpected and utterly devastating, still is, as we’re still grieving that loss. Even moreso when I realized that I would not be able to go home to pay my last respects to her and to throw my arms around her Husband Dax, her children, and our families. I have already typed out most of my thoughts about her in Facebook land, but one thing I do know is that it is my goal to strive to be more like her in my life going forward. She battled mitochondrial disease and many dysautonomic disorders throughout her life and still, she would fight for those who could not fight for themselves. She would join family events with a smile, even though you knew she might be in pain. She lived her life for her children and for others in need. And she never gave up. Or gave in. I really to this day, do not know how she did it – especially if I were to put myself in her shoes with the heap that I feel has been on my shoulders the last few months. She’s been there, multiple times, done that – and still somehow managed to laugh and smile through it. I think of her daily, especially as I struggle to battle my own mind, depression, and anxiety of what we are going through right now.
You would think I’d be done there but I’m not. What happens next is that Desmond gets his first ear infection, a double ear infection at that, with temps spiking from 103-104 within those first 36 hours of diagnosis. That’s scary for any Mom or Dad, but add autism into the mix and all you’re thinking is “How or will these temperatures affect his development? His autism? Will they impair him further? Will they cause lasting damage? Will they make him take 10 steps backwards in all the progress he’s been making?” along with “Is this a new thing now that he’s nearly 20 months old? Is he going to start getting ear infections all the time now?” Every single day is a new worry for me right now. And there is no rest for the wicked before the next worry comes along. This week the worry centers around Desmond transitioning into the next room up at school and starting his ABA Therapy at school the same week. Sometimes he’s good with change, sometimes he’s not. I am hopeful, (especially since Desmond’s BFF “T” is already in that room) but preparing myself if it is a struggle at the same time.
While I’d like to just be my infallible, perfectionist, OCD self, and in that, not let others in to what we are currently struggling with, I know that I need my community, my tribe, and others who have been in similar situations as myself right now. My automatic reaction is to turn inward, close off, and deal with the tough stuff myself. In order to grow, I need to change my behavior (ahem, a little nod to what ABA therapy is all about). I am therefore letting you all into the tough stuff going on in our lives right now. I need your support and I need your prayers. Life has been shit lately…but I’d like to take that shit, turn it into fertilizer, and grow a beautiful garden from it, filled with love, light, and prayers from our tribe. xoxo
It is interesting to me when someone articulates how they are feeling in the face of adversity does not have to sound negative. This post sounds raw, pure and inspirational. Thank you for sharing your life events in this forum. All I can offer in return is love and respect for you and your family. Stay in the light of love.
Jen.. Wow.. Just wow!! I wish ypur family everything you need when you need it and am sending you tons of positive love and hugs xoxo
I have spent close to 20 years of my career educating students like your little Fox. As I have told you before I would kill to have a hand full of parents working as tirelessly as you and Adam are to make Desmond happy and successful. You are amazing people! Keep it up! That little guy is lucky to have special parents like you!
I agree with Barbara-this seems in no way negative; rather, a raw account of your current experiences, and for lack of better words or terms, “keeping it 💯.”
You and Adam are inspirations. Des is blessed to have such amazing parents. You are always on my mind, and we are sending much love, light and peace your way.
Darling Lady, you are a beautifully talented writer, with an open and kind heart. You are tired, but strong. Keep plugging away, and one day you will notice blue skies and birds singing. Seems adulting takes the experiences you are working with ore frequently than carefree days. Big hugs and lots of love and understanding your way, Beautiful!
Yep! You deserve a pity party! And then you will pull yourself up by the bootstraps and be an inspiration to those around you! Sending you positive mojo! ❤️🙏🏼❤️
Jen-
First of all, I love you! Your blog brought tears to my eyes. I’m not comparing, but I have Kyah in physical therapy right now. She was thriving until about the 8 month mark, she got pneumonia and stopped thriving. I called 1st steps who provide services to most of Indiana on physical, occupational, speech therapy etc. Kyah started physical therapy at 11 month and started crawling with a month. She is 14 months and not walking. That is just a lil bit of my story. I just wanted to thank you for sharing bc now I have a place I feel like I can share her story. She is not quite old enough to be screened for autism as I was told 24 months? May I ask how you arrived at Desmond’s diagnosis of autism at less than 24 months? Just in case, I know what I have to do to get a diagnosis. Also, I’m glad I read this so I can keep Desmond, Adam, and yourself in my heart and prayers as you take probably one of the hardest journeys of your life. I have to ask, I feel scared to get a diagnosis. Did you feel scared to get a diagnosis? I feel like I’m being selfish by wanting her to be “like other kids.” I just want her to have a great, happy life bc I love her so much. I wrote this in a haze, as we were in the er most the day bc she started refusing to eat table foods and is constantly throwing up. I hate seeing her like this. I think she is stronger than me bc she always smiles! I hope things get easier your family. I’m so sorry that you have to “fight@ for Desmond’s therapy” when in today’s world this should not be the case. If you want to call me anytime and just “catch up” which it sounds like you barely have time to wipe your butt, but I would love to hear from you! From Kyah & I’s lair to your family’s lair! I hope things start coming together so he can receive the therapy that adorable little fox not only deserves, but should be happening now bc time is important as I’m sure you know that. Right now, I’ll focus my prayers on his therapy being approved! Much love!
Phone # is 260-***-****. The 1st one I gave you had a typo and is wrong! Bless all 3 of you! 😘
Bless your sweet heart Amanda. I adore following Kyah as she grows and all the pictures you share of her. I am so sorry you are going through this struggle. We started with a similar program out here, called Kindering, and that was really our first evaluation for Des right around 13/14 months of age. We got evaluated at that time because Desmond was not transitioning from bottle to food at all. He stopped eating baby purees at 9 months and just stopped eating solids at all. So at 13 months he was still getting a bottle and we were facing him being put into the next room at his school, wherein they did supply bottles during the day. He had to learn how to eat or we’d have to take him out of school for his safety. Kindering did a 2 hour assessment and scored him with deficiencies in various different developmental categories. From that we put together an IFSP (Individual Family Service Plan), with goals and assignments of an occupational therapist and special educator, as well as a speech language pathologist to be added in the future. By 16 months of age, Desmond’s Special Educator, his OT, and myself all noted that we were concerned with the possibility of autism based on certain behaviors he was showing, and they gave him something called the MCHAT which is basically a toddler early risk assessment for autism. I strongly encourage you to find someone, the pediatrician or a different evaluator – to give Kyah the MCHAT as soon as she turns 16 months. The starting age for that assessment is 16 months. Des scored at very high risk for autism from that assessment and from that point, we got on all the waitlists we could for an official assessment, which we got very shortly thereafter (We were very blessed in that moment!). The autism diagnostic assessment took place at the University of WA over 4 different 2 hour appts, with Desmond, us, and a clinical psychologist/psychiatrist. And by 17.5 months of age, he had his official diagnosis. So yes it is possible to screen for it before 24 months, but definitely requires someone who specializes in early intervention (birth to 3 years) for autism, which the University of Washington does. Trust me, you are not being selfish at all! There is certainly fear in going through the diagnosing process and the what ifs and when you do get the diagnosis, if you get it, you will go through a grieving process because suddenly your entire world is turned upside down. Everything that you had hoped and dreamed of for your child (functioning as “all the other kids”), is gone. And you suddenly have no idea where she will be developmentally in 1 year let alone 5 or 10. The diagnosis will never define your sweet Kyah, but it will make some things more challenging, and others more rewarding. That’s why early intervention is so important though too – the sooner you get a diagnosis, the sooner you can get her the help she needs to grow in those areas of developmental delay. And for the record, she may just be developmentally delayed in 1 or 2 areas. That may not necessarily mean she has autism – she could have any number of things going on, including just being delayed. It happens. Another thing they may recommend for you in the future is a developmental pediatrician who specializes in developmental delays, finding the cause, and addressing them. There is no cure for autism, but there are so many things you can do to help guide her and grow her into being the best Kyah she can be! 🙂 The fact that all you want for her is to have a great, happy life, means you love that little girl more than anything in the world. And that’s what she’s going to need the most – your love and support. And how very sweet and unselfish of you – during this time of need for yourself and your daughter – that you are reaching out to support us and give us love and prayers! Seriously – that’s beyond. <3 Love you two so much. I will definitely reach out as soon as I am able and please know that my prayers and support are with you and Kyah as you guys are going through this tough time together. Feel free to message me on FB anytime and I will shoot you over my cell number too. All our love!
I will respond more but I had her evaluated at 10/11 months. Like you, I didn’t want that admit to myself there may be problems. Finally, I caved to my family’s request. We are somewhat following the same regime. After just 2 weeks of therapy, she started crawling. Right now, she makes all the noises she is supposed to. Like Des,she still usually wants her bottle and recently (within last month 13/14 month mark she stopped eating table food & baby food) but she was vomiting a lot so I don’t know if that’s why. She is on nexium as of Monday. We still have a long way to go. She is 14 months and not walking. She pulls herself up and is very proud and wants everyone to see. Again, thanks for sharing! I’m sorry your going through this also but it sure is nice to read this bc it touched my heart as you described your feelings and questions bc I have had many of the same ones. Sounds like the therapy is helping Des a lot, and that makes my heart happy! Have a nice Memorial Day weekend!