April. That's when I started the evaluation process for my lil kiddo because I felt there was something missing, some piece of the puzzle that I had overlooked and needed to find in order to better parent him. Here we are, almost a year later, and I can finally provide the 'news'...
This journey has been intense and overwhelming. The emotional roller coaster has been far from being the kind of thrill I'd actively seek, I can tell you that much. When you start such procedures with your child, it's not just your child that is evaluated. Your entire family, your household, and yourself will expose every vulnerability while the professionals work to decipher what is going on. While I am an honest and relatively open person, this felt like an intrusion that I was not ready for but knew was necessary. Let me tell you, no parent is perfect and, if you're not at least a little bit nervous about what you might be doing wrong, you aren't parenting right. You can only make progress if you are willing to admit the areas that need improvement. In my case, I am all too aware of them and could only hope I could cope with facing them with grace when pointed out. It's not been easy, sitting in front of a behavior specialist who can see right through you without needing you to speak. It's daunting and you can only hope that the person on the other side is as human as you. The good news? We made it. Throughout this journey, we learnt a lot about our kiddo but also about ourselves and our family unit. In many ways, we came together. Yet, in other ways, our weaknesses were exposed and we are now left with the task of strengthening them if we want to move forward. In the end, we're just as normal as other families and yet we found out the truth - we are also not.
You see, we're officially seen as a 'special needs family' with a need for extra support for some time. I wish I had all the answers and could finally state things as plainly as I would like - like I expected to be able to do - but reality is always a bit more complicated than that. After months of evaluations, tests, 'treatment', etc. we will not be getting a diagnosis - simply because there are no clear answers right now. This is difficult and frustrating for me to explain as the psychologist herself has gone back and forth about whether or not to give at least a provisional ASD diagnosis but we have ended up at the 'no diagnosis' phase of our journey. Last month, she explained to us very clearly that our son is more likely to be on the spectrum than not, is 'special', and that we can continue to call it autism for practical purposes. However, yesterday, she was more leaning towards 'this doesn't feel like autism'. In the end, however, what truly matters, is the fact that she is not ready to officially rule out or diagnose it - and I respect the decision. I have my own reservations for many reasons but I am also only a mother and have no actual knowledge of child psychology and will not be arrogant enough to think I know better. What we DO have are many autistic traits that make him 'more autistic than neurotypical'. But, even in that, kiddo is not typical. He's not typical according to any label or definition at this point. He's not a neurotypical child by any means, but he's not necessarily typical of a spectrum child either. He has a higher intelligence but might not be gifted either so it is possible that 'Twice Exceptional' also doesn't fit. In fact, the psychologist herself has admitted to him being a puzzle and understanding the frustration that comes with not having the answers right now. At least we know she has enjoyed her time studying him and his rather out-of-the-ordinary traits. ;)
However, the main reason for getting a diagnosis was always to provide kiddo with the support and services that he and we need to get him to flourish. While he may not be autistic, he actually functions just like an autistic child and needs the exact same 'treatments'. But how would we provide him with these without a diagnosis? That was my biggest question.
Well, through all of this, kiddo has been officially diagnosed with a Moderate/Severe Speech & Language Delay/Disorder. So, for all the naysayers saying kiddo would just talk when he was ready, was delayed because he is bilingual, etc. there you have it. We did everything right and acted when it was time. We knew. I knew. I could hear it, I could see his communication not working the way it should, I knew just how much time I spent with him on it at home. Because of this, kiddo's speech is actually affected badly enough that he cannot join a regular elementary school by the time he would be eligible to do so. Instead, he will be attending a specialized language-based preschool until he turns 4 and then, if all goes according to plan, he will be granted access to special education and join the elementary school (the same school that provides the preschool) that specializes in educating children with visual, auditory, and speech issues. It is the full regular academic programme but it is also tailored to fit the child individually in accordance to his or her needs. The children there have no cognitive impairments, no major behavioral issues, etc. This was something that needed to be considered for kiddo as, even if he had been diagnosed, he'd have been most likely placed in a regular school with minimal supports - which would have been massively insufficient. The thing is, this school, is probably the best place for him for his 'perhaps-not-really-there-autism'. Compared to classes of 20+ students, there are only about 12 students in a class at this school - something essential for our kiddo because he cannot function well in larger groups. The school is very structured and routine-based, just like he needs. The school provides physiotherapy as well, which is something kiddo needs for his Sensory Integration Disorder - because he does have that as well. They make extensive use of pictograms and visual aides, which is something he needs at this time. The school is also staffed with specialists of all sorts, including a child psychologist who will continue to monitor his development as a whole. This means, while a diagnosis has not been given at this time, it doesn't mean it will not come in the future. This also means that, in the future, we might look back at this all and be glad he wasn't given one. The school is also one of the most expensive schools one can attend so he definitely needs to be granted the indication but the team seemed very confident that he'd have no issues getting it.
The thing is this: there is a plan - a place where my child can flourish and be happy. A safe place where he can grow and be allowed his issues - with kids with the same kinds of issues. Labels, diagnoses... - in the end, they are words. Sure, in many situations, it affects insurance, grants, etc. For now, in our case, it will not. Therefore, I am taking a step back and allowing the plan to go forward. Do I wish I knew why my kid is the way he is so I knew exactly what to do when? Yes, of course, but isn't that every parent's wish? I mean, let's be honest here. Even if we had a diagnosis, would I truly really just suddenly know everything? I wouldn't. No child comes with a manual. Ours just tends to be a tad more out of the ordinary than most. We have that confirmed by a psychologist with years of experience so we do get that validation, at least. ;)
I still have many questions - questions with no definite answers at the moment. Intuition tells me one thing, but the experts tell me differently so I am going to respect the opinions and sit on my own thoughts for a little bit while I observe more. I am confident that more time, experience, and observation will guide me the same way it has in the past. Things will fall into place when and if they are meant to do so.
In the meantime, we work hard and learn intensively - sometimes the hard way. We continue to strive towards becoming and offering better versions of ourselves to each other. We continue to learn more about each other but also about ourselves as individuals and learn to love ourselves more - to be kinder, gentler, and more forgiving of our failures and yet understanding the importance and impact of pushing forward and striving for progress and improvement...
Success isn't measured in goals, it is measured in steps.
