The Storm Before the Call

After getting off the fence, our next year was extraordinarily chaotic. I was working 50 hours a week, my husband was working shift work and home at sparatic hours, and taking care of Joshua was at an all time challenging high. At just over 18 months we began with the Early Intervention Program because Joshua wasn’t talking. The wonderful lady that came to our house once a month was such an incredible support to our family over the next year. We had meetings with OT’s, Speech Pathologist’s, Psychologists, and each visit they were all very supportive and listened to us. The OT did a sensory assessment, which was an intensive questionnaire to get a general idea if his behaviours were more or higher than normal for that age. He was about 2 years old so because of his age a lot of his challenging behaviours were “typical.” But the OT knew that we were struggling and I had been making many accommodations for him already. We had stopped going out as often, I didn’t take him to grocery stores, we fed him the same homemade Mac and cheese every night for 6 months, had a difficult time warming up to new people just being in the space. All of these behaviours could have been just typical separation anxiety or a picky eater. But these people listened to us and they believed me. During these visits I didn’t feel crazy or brushed off for my concerns like I had been by Joshua’s pediatrician. When I brought up muscle tension and him rubbing his head on walls, doors, and floors all the time, his sensory problems, being difficult to calm, trouble handling new environments the doctor said, “It sounds like you are trying to bring up Autism.” I responded with, “Well I don’t know, I am not sure but I do know that some of these signs can be related to Autism.” The doctor knew I was an Early Childhood Educator and ran a dayhome, but he brushed my concerns off like I was an overbearing mother and moved on. Even during the visit to ask for the referral to the Glenrose because the OT and our consultant recommended it, for the preschool diagnostic assessment, he point blank said to me, “He is not autistic. Look at him.” I nodded my head because I knew it wasn’t worth the conversation and I probably would have gone off on a huge tangent. I didn’t know if Joshua was on the spectrum because the two common questions asked, does he make eye contact or answer to his name, Joshua did these things enough to not be a concern. The idea of Autism had been going through my mind a lot and the doctors comments did not make me feel confident or comfortable asking for his help, which is where we are told to go when we as parents have concerns!!

Thankfully the experts with the Early Intervention Program were amazing and helped us get sorted by getting Joshua diagnosed with a severe speech delay to allow him funding for specialized preschool for Fall of 2017. The Speech Pathologist who visited our home was wonderful and made the process very easy on us. I had a wonderful experience with the Psychologist who also visited our home and this was the beginning of a real possibility of being diagnosed with Autism based on their observations of Joshua. We put our referral into the Glenrose in late February, and this is the only place to be diagnosed in Alberta I believe, and they told us it would be about a year before we could get an appointment. In our current world, that felt like a lifetime, because even though we were living on the other side of the fence and getting some tips from others Joshua was really struggling with daily life.

Spring of 2017 was the worst. My mom and mother in law both came for visits back to back, and we were so excited to have some help. But they weren’t able to, Joshua could barely handle them being in the same room as them, never mind holding or interacting. I was working long days, sleep deprived, exhausted, worried, and felt very overwhelmed with everything life was throwing at us. During the visits Joshua was extremely over stimulated and began to self harm. Anything would set him off and he would run full tilt into a shelf and smash his head on it, or while having a meltdown on the floor he would smash his head on the floor. There was one day Joshua smashed his head intentionally 12 times within 2 hours on our hard cement floors while I was working. He had a gigantic goose egg on his forehead and I said that’s it and I sent all the children home. We couldn’t function that day, and I needed to listen to what my son was desperately trying to tell me.

After this very difficult time I began to make some changes in my dayhome. I created a cozy space for Joshua, to be able to get away from the children, sounds, and stimulation when he needed. I spilt the reading area into half his space and the other half reading. I used a small play pen mattress, some throw pillows, and sensory boards to create a safe place for him. Joshua was also beginning to communicate that he needed a lot of tactile stimulation on his body. He would take our hands and bring them to his legs or direct them to his back. He was needing that tactile contact and it really helped calm him. The trouble was he was wanting me to do this for 10 min at a time and every 30 min. I wasn’t able to do this as I had 3 other children to attend to and many other duties to complete in our day. So this resulted in meltdowns and me feeling extremely torn to help my son and to do my job. This is when I was taking a moment in the bathroom and crying having no idea how I was going to do this. I kept saying, “I can’t do this, it’s too much.” I was ready to shut down my dayhome. BUT the thought of putting my extremely overwhelmed, high anxiety, sensitive son in a gigantic daycare in a crazy toddler room with 12 other children with educators who may not be as accommodating and understanding to his behaviours pushed me to keep trying because I knew that would be a major disaster for Joshua and our family.

I continued to make accommodations in the dayhome such as reducing the lighting, turning off the bright fluorescent lights and using a soft lamp in the areas he spent most of his time. I put up sensory paths on the wall so he could get the stimulation he needed, whenever he needed. I continued to use baby sign language and simple words, although it didn’t feel like it was making a difference. For transitions I did the exact same thing each time to help him learn the routines. And we encouraged Joshua to stim, the rubbing his head on floors and repetitive behaviours. We have never stopped Joshua from stimming and never will. We feel that if he feels the need to stim, whether it’s to calm or because it feels good for him, we embrace it and encourage him. He is self-regulating, if the way he chooses to do so is “odd” we don’t care if it makes others feel uncomfortable or stare. I can tell you that him screaming his head off for who knows how long is much more uncomfortable for everyone!

By summer of 2017 we were able to get out the door without tears the majority of the time, and I had moved around the whole dayhome environment to provide a much more secluded space and I gave him the IPad whenever he needed it. YES HE HAD ACCESS TO A SCREEN WHENEVER HE WANTED. I knew the impacts on his development, but I also knew that him screaming literally all day was not beneficial to his or the other children’s development as well. I had to find a way to keep my son happy and do my job as well. I did however make a list of educational videos he could watch, and I truly believe these videos helped him learn some words because he is such a visual learner.

That summer we went to Winnipeg for a family reunion on my side, and Joshua did amazingly well with 40+ people in the backyard and house. He ran around with his cousins, enjoyed endless amounts of fresh air and passed out at bedtime. Unfortunately the next day he was in sensory overload and vomited multiple times, was feverish but no temperature, very lethargic, irritable, and very sensitive to stimulation. In fact it took him about a week to regulate and get back to normal after this reunion. During this trip, August of 2017, I got the call from the Glenrose to book our appointment!!!! And it was going to be for Oct 30 and 31. We were so excited to finally get an answer as to what was going on in our very crazy lives. But I was also very nervous that my concerns and detailed observations would be brushed off as they had before from some who only spent moments with Joshua. We also got a call that my husband was getting a new job and that meant he would be gone for 7 weeks training. It was going to be me alone working 50+ hours a week, taking care of 4 children, our son starting specialized preschool, taking care of the house, getting up in the night with Joshua, and dealing with all the daily meltdowns alone. These 7 weeks ended the night before his official assessments at the Glenrose. By this point, I was desperate for some sort of answer, anything to say it’s not all in my head, I am not crazy, and for someone to “officially” believe me.