This is Daniel, our third child who’s not yet 3.5. He was a surprise baby and my pregnancy was quite rough because of difficult external factors, but he was a gift to me and our family that God knew we needed. Once we revised some oral ties, he was definitely my easiest baby and was developing normally physically and otherwise from what we could tell. But by 2.5 he was still not really talking and we began to be concerned that he also wasn’t understanding things like he should. We also began to realize some sensory and funny little behaviors that slowly began to increase. He began Early Intervention and then at age 3 transferred to doing speech therapy at a local kid’s therapy spot, adding Occupational Therapy shortly thereafter. The end of October we finally had an autism specialist do a short observation to tell us if we should pursue further evaluation/tests. By that point in time we were not shocked that recommendation was that we should, and early December after a full evaluation he has an official Autism diagnosis that is “moderate to severe”. (For reference, one of the three tests he scored an 80 - normal is 59 or less and 80 put him in the "severe" range for this one.)
When we were first confronted with the likelihood that he was on the spectrum there were a lot of mixed feelings, and there continued to be all the way up to the day I received the report with the official diagnosis written on it: Autism Spectrum Disorder. Actually seeing those words written on the report impacted me a little more than I expected. As with any special needs diagnosis, this certainly changes a lot. It changes how I imagined our family operating or doing all sorts of things, and it changes how we would have done homeschooling (we still plan to homeschool him, but obviously it will look very different), and of course this impacts our family life and his siblings as well. It already makes things very busy (having a busy 8 month old as well right now it's like I have two toddlers) and it makes it more difficult for me to do simple things that I would otherwise be able to do (like socializing, group activities, or being able to sit in church regularly). One blessing is that our family already has quite a bit of practice with special needs. I have an older brother with a genetic disorder and I grew up helping him with various things (currently, he and my oldest, who is 7, are best buds). Then there's my nephew who was born last year with Down's Syndrome.
When things like this happen, there can be lots of “why’s” or “how’s”. The common stories you may have heard are from parents who's autistic child wasn't always that way - they had a regression (this almost always occurs some kind of trauma or introduced toxins) but other autism isn't tied to any one event, it's something they've had from birth, although most of the time it isn't obvious in behavior/speech until 2-3 years old. For Daniel, there were very small signs looking back but they weren't noticed or weren't things that initially concerned us (example, his sounds/babbling as a baby was more limited). And we had no regressions – in general he just got to a point where he just never kept progressing as a normal kid should, and at the same time his sensory seeking gradulally increased as he got older. Ultimately, scientists/doctors still don’t know for sure exactly how or why autism occurs - they do know that there are various factors that need to come together to create the “perfect storm” that results in diagnosis’ like this, but "HOW" this happens is more the mystery. Not to mention, the precise factors actually involved is different for each person. Genetics are big factor; other factors are disruption in early pregnancy during crucial brain development, mother’s emotional state during pregnancy, toxins (vaccines, medications or other toxins during pregnancy or shortly after birth), or birth trauma. Daniel had no birth trauma and I'm aware of no toxins that he would have gotten. You could drive yourself crazy trying to figure out all the “why’s” so I try not to think about it too much. You can do your best and try and do everything right, but often there are things beyond your control or knowledge. As a Christian, my hope lies in a God who isn’t surprised by things not happening the way they are “supposed” to, who knew long before we did that Daniel would be born “special” in development and needs. There have been times when “why me/him?” comes to mind, but “why not?” We live in a fallen world and sometimes things go wrong. As hard as this is, I also recognize that he could be a lot worse - many families struggle with more difficult and higher need children. Still, this is our suffering we are called to endure. My husband reminded me of this verse from 1 Peter:
“After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen and establish you” (1 Peter 5:10).
God will walk with us through this journey, just has He has through our lives thus far. And He will work in and through it for our good and His glory. My dear husband also reminded me, that the worst thing in the world is not a special needs diagnosis.... the worst thing in the world would be for any of our children to not know and belong to Jesus. May my first prayer always be for Daniel to know the Lord and love the One who gave Himself for us - as much as I hope and pray he'll grow up to live a "normal" life, everything else is secondary to his soul belonging to Jesus and knowing we'll see him in heaven one day.
But as his parents, we also want to do whatever we can to help his body/brain function optimally, or to even rebuild. We caught this early and while it will be challenging, I do hold onto the hope that with therapy and hard work he can grow up to be high-functioning and largely independent. Since this past summer we’ve been exploring various things to assist in the health and development of his body and brain. A friend told me about folinic acid and we did see a noticeable increase in his speech at least. We’re also seeing a naturopath and working on some things health-wise. He’s still currently doing speech and OT, but we’re in the process of pursing ABA therapy, and praying for the right therapists to work with him/our family. The biggest reason we pursued a diagnosis was to open the door to more therapy options (and insurance coverage).
If you have a child with special needs, I’d love to hear your experience and what things have helped them or you, or how God has blessed and worked in and through you through this journey. Community and encouragement in our trials and struggles are immense blessings, I hope I can be a help and encouragement to someone reading this too.
