Waiting – Norah Jones
God Only Knows – The Beach Boys
Cello Song ft. Jose Gonzalez – The Books
“So forget this cruel world where I belong
I’ll just sit and wait and sing my song
And if one day you should see me in the crowd
Lend a hand and lift me to your place in the cloud”
Deep breaths…Buckle up, and hold on tight. I am writing this blog post for myself to process the struggles we have experienced as parents of a child with autism, in very recent days, and to share that with others who have maybe gone through something similar or are going through something similar. Maybe writing will help me manage the tremendous weight of grief and guilt that I am feeling, and immense hopelessness. I am sure it will not be the last time I feel this way. It certainly has not been the first in our autism journey. What I did not expect was for it to seemingly hit me out of nowhere.
To set the stage, Sunday evening Fox Man and I headed over to a dear friend’s home to have a “play date” of sorts us two Moms and our 2 Boys who are somewhat close in age. We’ve been friends for what feels like forever, and we have seen enough of our own ups and downs through this life, that we are family, we are there for it all, for each other. It started well enough, but as the night wore on, I could tell Fox was struggling. I had noticed how little he interacted with his peer, how little he actually played. He became obsessed with my friend’s screened-in-porch – which is gorgeous, and I would be obsessed with it too if it weren’t the middle of winter in Indianapolis. I let him hang out there for a bit, but ultimately brought him back inside, closing the curtains and refusing to let him go back out. Well, that is when the meltdown began. And I mean meltdown – tears, anger, hitting, no communicating, for God knows how long. It felt like eternity to me. Through this process, I couldn’t do anything to calm him. Not one thing. And I started crying. I tried my hardest, but dammit the tears just fell. This was the first time that it really hit me very hard, how different my child is. This was not a typical 2 year old tantrum – I’ve seen those. While I may not have known previously, I now fully know the difference between a 2 year old tantrum and a meltdown in a 2 year old with autism. The only thing that finally calmed the Fox was a bottle. It is entirely possible he was hangry, and that is moreso what triggered his meltdown. He does this to himself and as much as I try, I can’t force him lately to even eat his preferred foods. Fortunately for me and for him, l was probably in the absolute safest space outside of my own home for this to occur. My friend held steady through the meltdown, making sure her two children understood that Fox was just trying to process too much, he got overwhelmed, and it was causing him to get upset, and we were doing the best we could to help him through it. Afterwards, she held me and let me cry. I cried all the way home. I cried myself to sleep that night. Was this the beginning of the darker side of the autism spectrum? We hadn’t really seen too much of it before – and it hit me out of nowhere, unexpected and I felt totally unprepared for it.
Starting Monday, Fox started his new school at Cornerstone. We were and still are so excited for this opportunity for him. To put into perspective, insurance was previously only approving 20 hours of ABA Therapy a week for Fox, threatening that they might have to take it down to 15 hours in 2018. And that was only for in center ABA therapy in Indiana vs. Washington, which we initially weren’t too keen on, mostly because our son is still pre-verbal, and only 2. That is, until we toured Cornerstone and met the wonderful people there and got to know their program better. We did a lot of research and read many success stories from previous children with autism. When we didn’t hear from them nearly a month after our evaluation, we thought it highly likely that Anthem just didn’t approve the full time 35 hours of ABA therapy a week, and we couldn’t make it work without the Medicaid Waiver as a secondary insurance. So I emailed them and told them hey, it’s okay, we weren’t sure we wanted to take Fox out of his daycare setting anyway, and thanked them for the awesome work they’re doing for children with autism. Not less than 24 hours later I heard back from them exclaiming that they were successful in their fight – and had been working very hard this past month to get authorization and approval for full time ABA therapy for Fox through our insurance, and could he start next week. We were shocked, grateful, surprised, and so very excited for the possibilities that this could bring to our Fox. We knew how successful ABA Therapy had been thus far in his journey at just 18-20 hours a week in Washington and were looking forward to what 35 hours a week might provide for him, helping him to learn how to learn, communicate, and grow in his developmental milestones. Since we moved in October, Fox hasn’t had ABA therapy. I felt grateful that we hadn’t seen too much of a decline in his skills, but he hadn’t really gained any either. So I was very happy to get him settled in, back into an ABA therapy program. 3 days in, and we’re on now a total of 4 days of afternoon and evening meltdowns (including the Sunday meltdown). Last night was the absolute worst one I have ever seen. And maybe that’s because there were two?…but the intensity and the duration of each meltdown last night was enough to knock me off my feet, push me down the rabbit hole of grief, and leave me feeling absolutely hopeless in this world of having a young child with autism. I told Fox’s therapists that very thing in his Desi Fox journal that they write in every day and send home to us to write back in. *(Another really fun part I love of the Cornerstone program). He has not been eating well for us, let alone in his new school with new routines, and that very likely is a huge part of the puzzle – as well as the new school, new faces, new routine, HUGE center, with so much possibility for him to play in. I am sure it is overall overwhelming to such a little guy.
That said, it is beyond heartbreaking to pick up your 2 year old, full of smiles and giggles from his new school, to bring said 2 year old home to turn into a 2 year old Hulk, throwing frames, books, stomping his feet, kicking, screaming, crying, being frustrated, and having absolutely no idea why – and there being no way for him to communicate to you what is wrong and what he needs help with. I tried everything I had in my arsenal: I ignored it at first (*this is usually how I rule out toddler tantrum vs. meltdown for now), I took him to his room for a calming space to listen to music, be in the dark, look at his twinkle stars, I held him tight to my body for compression (think Thundershirts for dogs who are afraid of thunderstorms), singing to him, rocking him, swinging him…and nothing worked. He ended up scratching at my face, fighting me off, and pulling my hair. Yes. My 2 year old, sweet, loving, giggly, soulful little boy – just tried to claw my eyes out for trying to calm him and help him through his emotions. My last resort was giving him a bottle. That seemed to reset him…until Adam got home and I had to hop on a conference call for work. 45 minutes through that conference call, Fox kept grabbing my hand and wanting to follow him, which I couldn’t do because I was on a super important conference call for work. You know, the work that provides for his family and provides his insurance, and keeps us in health and home. No, not important to Fox in the slightest (nor likely any 2 year old for that matter, right?). He. Lost. It. Again. Adam took him to our bedroom so I could finish my call, tried to distract him with his own arsenal of tricks, and again, nothing worked until I could follow Fox around like he wanted me to do to begin with. Some reading this might think, well, that’s not autism, that’s a bratty 2 year old who needs taught a lesson. Let me be very clear: Until you have carried a baby throughout a healthy pregnancy for 41 weeks, gone through absolute hell to induce said baby out into the world only to wind up in the NICU, raised said baby through infancy, as healthy as can be, to then be diagnosed with autism at 17.5 months, and gotten to the stage of being a healthy 2 year old, fighting tooth and nail for basic services to help him learn how to speak, how to eat – you have absolutely NO IDEA what you are talking about. If you are a seasoned psychiatrist or therapist, or a parent with a child with autism or even just a parent who wants to share your own war stories, feel free to give me advice and share. But don’t you dare call my child a brat for not understanding social cues or being able to communicate himself, or suggesting that we need to physically punish him to ‘teach him a lesson’.
I know logically that he is trying to understand his new routine, his own body cues, social cues, and learning SO much in a jam packed 7 hour day of therapy, he’s also not eating well, and that is likely causing his outbursts at home. But for now, I do not know how best to help him through it. And what scares me, is that this will be the rest of my life. Only, when he’s 18, he’ll be 6ft tall, weigh 200lbs, and overpower me quite easily. This very fact is why early intervention is so very, very important. I am trying to be hopeful that Cornerstone will help us through this and give Fox all the tools he needs to eventually be able to process his emotions and communicate better with us. It is only Day 4 of this new school. I am trying to be patient. But I am heartbroken. My soul has been crushed, yet again. I feel like I am not doing enough to help my son. But what more could I possibly do? I have to accept that my love won’t be enough to help him through this. I have to accept that this is autism. And this is a 2 year old with autism. Things are going to get ugly and messy, but with faith, hope, and lots of prayers and struggle, we’ll come out the other side of it with a lot of lessons learned and way more communication with one another. At least, that’s my hope. That’s all I have for now. My very tiny, seemingly miniscule mustard seed grain of hope.
