Today is one of those days I want to just crawl in bed, pull the blankets over me, and just wait for the next day to come. It’s been emotionally draining, I’ve cried twice already. That’s not like me. I usually am really good about putting on a smile and going about my day, where no one would have a clue how upset I really am. But I don’t know, today I just can’t do it.
April is Autism Awareness Month. They say autism can be an invisible diagnosis. Sure, there are some kids who are further on the spectrum who don’t talk, avoid any physical affection, etc. But the majority of kids on the spectrum, from afar, seem relatively “normal.” If we’re friends here, you may or may not know, that Jordan is also on the spectrum. It’s been 3 months since we finally received a diagnosis for Jordan, and that all of our challenges we struggled through for the first 3 years of his life were finally, in a way, validated. Finally. We’re not bad parents. We didn’t fail him. We didn’t “blow it,” as our first jerk pediatrician told us. We didn’t do anything that caused his sleep issues, his reluctance to potty train despite our endless efforts, his unpredictable meltdowns, his complete disregard for any food that isn’t in the form of some familiar carb (like mac & cheese, quesadilla, or pizza). However, I constantly feel isolated in our situation, like no one understands. I also know that is partly my fault, because by nature, I don’t let people in. It’s how I’ve always been. I’m not proud of that trait of mine, but it is what it is. But I think I need to start being more transparent about things, so here we are. I sit here typing this to share a little bit of what it has been like.
About a month or so ago, I had a particularly bad day. I was home with the boys and thought, “It’s a nice day, why not get the boys outside for a bit?” This is something I usually don’t attempt because it’s absolutely exhausting but for whatever reason that day, I felt up for the challenge. It was worth it to provide them some happiness at the playground at our place. I held Evan and walked with Jordan to the playground, but to my surprise, as soon as we got there he started crying saying “NO SLIDE! NO SLIDE!” He sat down on the ground and wouldn’t budge, wouldn’t even walk back home with me. A little girl walked up, asking what was wrong with him. I casually told her, smiling, “Oh, he’s just upset because he doesn’t want to be here at the playground.” Meanwhile, I was freaking out inside about how I was going to get him back home. Well, it took at least 30 minutes to walk what would take about 3 minutes to get back to our front door. I called Tony panicked somewhere in that time frame, because I literally didn’t know what to do I had Evan on my hip, Jordan screaming, melting down, and it was physically impossible for me to carry them both. Eventually, foot by foot, we made it back. Tony came just as we were at the front door. My hip (which is already a bad hip) gave me pain for two weeks after that. I came home and cried. Like practically sobbed. I haven’t attempted to go anywhere with my boys since because I just can’t do it. So I’m literally stuck at home with them on the days I’m home.
Despite these issues we deal with, I am thankful that Jordan does have at least some sort of verbal communication, although limited. He tends to refer back to his same known phrases. He doesn’t know how to create spontaneous conversation/sentences. I would do anything to be able to have a conversation with my son; for him to ask me a silly question, like most little boys his age. “Who, what, where?” Those are not words in his vocabulary, and it breaks my heart when he resorts to whining and crying instead of being able to simply tell me what’s wrong.
I’m also thankful, because many kids on the spectrum tend to have sensory/emotional issues that make them uncomfortable when touched, and do not like to give hugs, etc. Jordan is not this way. He is the most loving boy I know and loves to come into the bathroom in the morning when I’m getting ready for work to give me the biggest morning hug. “Mama hug” he always says, with his arms extended out to me.
Back to what I was saying about autism being an invisible diagnosis: in some ways, the fact that Jordan’s diagnosis is not immediately apparent can be a challenge as well. If I’m being completely honest, I admit that I was once that person who said I would NEVER let my child have an electronic device, such as an iPad, at the dinner table. ESPECIALLY out at a public restaurant. I knew I would be strict and never allow it. Well here we are, 2 kids in, and you can bet that if we go out at a restaurant Jordan will most likely have an iPad in his hands. It’s absolutely essential if Tony and I ever want to have an opportunity to eat out and not feel isolated in our own home. If not, Jordan will be standing up in the chair, crawling under the table, shaking salt and pepper everywhere, or simply melting down and screaming because he just cannot sit still in a chair for an extended period of time. But the worst part is I feel it. The judgment. Even if no one around actually cares, even if it’s not actually there, I still feel it. When Jordan is having a meltdown I wonder if someone nearby is thinking “Why doesn’t that mom discipline her kid?” or “My child would never act that way.”
Having an ASD diagnosis for Jordan also brings with it a lot of fears and a lot of questions. What does the future hold for Jordan? Will he have friends? Will he grow up to live independently or am I going to be raising my child for the rest of my life? Will he be happy? And what about Evan? How will that be for him growing up with a brother who has more need for our attention? Will he feel jealous? Neglected? Will he be upset that he has a brother who is different? And then the worst ones, usually something like, “What did we do to deserve this?” I don’t know the answers, and these things swirl around in my mind everyday…today more than others.
I thought after his diagnosis, we finally had the answers and could start getting him the help he needed. To make things easier for him, AND to make things easier for us. But February came and went, then March. And now here we are in April, and still in the same place we were in January. Finally, this past month we were finally given the green light to start the process with the school district, but now it’s just been evaluation after evaluation for the last two weeks. I mean, twice a week, my husband and I have to manage to arrange time away from work to take Jordan solo, without his brother, Evan, to these appointments.
Each evaluation session is stressful, with various therapists trying to get Jordan to complete different assessment tasks for them. “Jordan, can you stack these blocks?” “Jordan, look at my book: which one is red?” “Jordan, can you string these beads?” “Jordan, which one is bigger?” It’s overwhelming for him, and he usually resorts to melting into a limp puddle on the floor, hiding his face or saying “No more book” because he’s just over it, or because his attention span can’t take it. Today both of the boys had an appointment with pediatrician, which was again, stressful. Evan screamed and cried the entire time, while Jordan was obsessed with turning off the exam room lights, freaked out when the doctor tried to examine his ears, kept trying to open the door to escape the room. By the time the appointment was over, we were both so stressed and overwhelmed. Thankfully, Evan knocked out in the car on the way home so that we were able to transfer him in his crib for his nap.
Reflecting on the appointment is adding to the constant stress I feel. A new issue has come up with Jordan, requiring another appointment (how will we ever fit this in with our already ridiculous schedule?). They also threw in the possibility of starting in Evan in speech therapy because he’s a little behind where he should be as far as first words go. There’s absolutely no way we could take Evan to speech therapy in addition to Jordan’s endless appointments, and our work schedules. The doctor agreed to give it a few more months and monitor but seriously? We really cannot handle another single thing on our plate right now.
I don’t know what the future holds for us. Right now I work part time because I love my job. I love being a nurse. But secondly, I NEED that time away from the house, where I have a work life. I hope that can continue. But at the same time, I don’t know how we will manage these multiple appointments. Will things settle down once this evaluation process is over and we move on to therapy? Or will therapy add even more to our already overflowing plate? Time will tell.
If you’ve made it this far, we must be good friends? Or maybe family. I mean, 1600 words is a lot to read if we’re not close. But if we aren’t and you still read…thank you. It’s hard to not feel isolated in this situation. I know I’m not alone. I know there’s millions of families going through similar situations. But when you can’t leave your house to go out with your kids solo, when even a simple family dinner out takes extensive preparation, when you aren’t good at letting people in, it sure can feel that way. I’m not writing this for pity, support, or encouragement. I KNOW I can do this. I know WE (Tony and I) can do this, even though it does make our own relationship way more difficult. I guess I just needed to put my thoughts somewhere, because over the past few months they have just been building and building in my head. I do hope that reading this helps you understand though, a bit more about Jordan, and a bit more about what we experience as parents, and probably other parents as well.