This blog post isn’t what was originally on the schedule to post today. I had originally planned on doing a “What’s in my bag” but life got in the way. I reopened my salon last week, and I have been absolutely slammed, trying to get everyone in who hasn’t been able to get in during the quarantine. I have been doing my best to get up early or stay up extra late to write and schedule my posts. Yes, I know this is a day late, and I have another one scheduled for today. So bonus post today! YAY!
This subject came to mind yesterday. My family and I have been on a journey to find answers for something that has been an issue since the birth of our oldest. We have been actively seeking answers and help for the past 2+ years. We have, as of yesterday, an unofficial answer to what is going on. We don’t get the official report for another two weeks but the unofficial results are that he is on the autism spectrum.
Now, I know that there are parent’s that this worries, or scares. But for my husband and myself we are just so relieved to know what the deal is. Now we can move forward without this feeling of limbo that we’ve been in for the past 2+ years. I feel like a weight has just lifted off my shoulders. Now I can seek out resources, help, and community to help us along this journey.
Starting from the beginning of when we felt like we needed to get some testing done, we thought he had adhd. At the time he was 4. He has always been very social and verbal, and BUCK WILD! He is our first child so we had nothing to compare him to outside of nieces and nephews (we have 14 nieces and nephews). He has always been very particular about things, even from birth. His blankets and swaddles had to be a certain way. He cried all the time, he still has more tantrums and melt downs than most kids his age. He has always been very needy. There are so many things that we just assumed were normal parts of having a baby, that now are so easily explained by autism.
So we got him evaluated at 4 a few weeks before his 5th birthday. And again at the time we thought we were just going to be in and out with a quick adhd diagnosis, and be done with this. This, however, was not the case. After the therapist reviewed our parent questionnaire, and the teacher questionnaire that his pre-k teacher filled out, she asked me if I had ever thought of autism. And obviously I said “No, he’s so verbal.” (So naive) She then explained to me that autism is so many things. It’s not just the on verbal type. And the more she explained that ASD effects so many things, the more it made sense. So after this meeting, we scheduled a test.
This day for me was so difficult! I couldn’t sleep the night before. I thought we’d be getting concrete answers. I was so worried, what if he couldn’t accurately take the test, I mean come on he was 4. And let me be clear I was not opposed to any diagnosis. I was so anxious all the time, and so worried about him. I was feeling like I was failing him, and that I was a terrible mom. We were being held hostage by our 4 year old. We couldn’t take him out in public at all because he was constantly having screaming, crying, meltdown tantrums. These tantrums were so awful. At one point I had to take him out of a public situation and he was kicking and screaming so bad that he ended up tripping me on the concrete outside on the way to the car. While holding him, I fell all the way to the ground. It was all I could do to try to save him from hitting the ground and falling on him with my weight. He ended up with a sore bottom and leg, no cuts or bruises, but I have cut up at bruised everywhere. My hands, arms, knees, ankles, and tops of my feet were very cut up and bloody. This incident was playing heavily on my mind. I was at my wits end. I was nervous. So by the end of the test I was expecting an answer. But that was not the case. His initial results were strictly on the borderline. The therapist could see the confusion and defeat in my face. She explained that he fell in between three different diagnoses. He at the time was in between adhd, autism, and ocd. She said that he was so little that we just had to wait to see how he would grow into or out of these behaviors. I left the clinic that day and cried. I was so upset for days. Not because all these things sounded awful and I was afraid to face them, but because I was so frustrated. I wanted to know. How in the hell do I help my son live the best life, if I don’t know what to do to help him?
So here were are at 6 years old, after lots of therapy (for him and myself), and able to take a new test. This time, after years in limbo, I was honestly not expecting much. I just figured we’d get another borderline diagnosis. I was afraid to get my hopes up. At home I had been doing my research and seeing that in my unprofessional opinion he was autistic. I sought out help with friends and family who work in the special education field. I talked with them, I cried with them, I have asked them so many questions. I was doing my best to learn ways to parent with autism, and practicing them in our life. So going into this test not expecting to actually get any answers, I just kind of had the attitude of we’ll just keep doing what we’re doing. So after the test, the therapist said we won’t get the official write up of results for about two weeks, but she was able to see from the initial results that he was obviously on the spectrum. She explained that looking at the past results and the culmination of all the therapy we’ve done so far, that her gut instinct about him was right. She seriously made my life, at this point. I feel so relieved. I feel like I know of more how to seek out help and research.
Obviously since we don’t have the official results, we haven’t come up with a new therapy plan in place. We don’t know what this will mean for school. I know we will figure this out, and that my son will now be able to get the helps he needs. He will get to live the life I’ve always wanted him to have. My husband and I will better understand him. We will be able to better show our son love and care and understanding in a way that he can better receive and understand. We love our son so incredibly much, as I’m sure all parents do. I’ve never, ever once wanted to change my son. I have only wanted to know how to help him navigate this big world. I’ve said from our very first therapy appointment that the therapy is not for him, it’s for me. I needed the therapist to get to know him so that she could tell me what to do. He is perfect and I just needed her to tell me what I’m supposed to do.
Thank the good Lord for our amazing pediatrician for referring us to the therapist as soon as I voiced my concerns. Thank the Lord for our amazing therapist. She has encouraged me, explained so many things to me, listened to me cry, helped me navigate the hard and frustrating things. I love her so much, I wish I could be friends with her outside of the therapist/patient relationship.
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