Starting Out & Stepping Out

I have been mulling over starting a blog for a while now.  After 5.5 years of navigating parenting on the autism spectrum I felt like maybe I had some perspective and insight to offer – particularly for new parents trying to figure out things on the front end.  We also have an older son who is not on the spectrum, and it’s been an interesting experience to be part of both the so-called ‘typical’ (whatever that means) world and the special needs world.  My hope is that special needs parents and typical parents alike will find an empathetic ear here, and to whatever extent I can offer support and insight to my readers, I will readily do so.

My husband and I have three boys – John (8), Jim (7), and Michael (1).  John and Jim are 14 months apart, and up until about 20 months old, Jim did not display any overt signs of autism.   When you read about ASD, there is a perception that the signs and symptoms of the spectrum will be obvious. For some families, it may work out that way, but for us and our sweet boy, the journey to deciphering a diagnosis and finding the proper treatments was an agonizingly slow, confusing and frustrating time.  Jim hit nearly every milestone as an infant, and up until about 18 months, we had no sign that there was anything amiss.  He made eye contact, he was verbal and picking up words, he walked on time, we had no feeding issues, no sleep issues, and he smiled big smiles.  We have so many pictures of him smiling into the camera with his big baby blue eyes.   You can imagine that this is an anxious time for us as Michael is now 16 months old.  Indications thus far are that he is not on the spectrum, but I would have said the same about Jim at the same age.

Somewhere between 18 months and 2 years of age, we began to notice a sharp drop off in new words and language development.  We began speech therapy soon thereafter, and I credit that decision with at least starting our fight against ASD although we did not know it at the time.   Over the next year, sensory processing symptoms (something we did not understand in that moment) began to emerge.  Something had definitely happened in his brain, and the changes were noticeable.  The auditory sensitivities and overall processing of his environment now made it difficult for him in most any situation other than his familiar home.  Where he had been able to function in a classroom, he could not.  He would get very anxious in loud restaurants, and he feared simple things that children are supposed to enjoy like going to a movie or birthday parties.  We couldn’t make it through a church service. Social interactions became increasingly difficult for him.  It was clear that the world was bombarding him, and all we could do was try to limit the impact as best we could.  We began to call around for evaluations where wait lists of 9 months to 1 year were common for full evaluations.  In the meantime, the situation degraded to the point where we had to pull him from school in the fall of his 4K year.

My happy, funny, sweet, smart child had been reduced to an anxious, agitated, sad, scared, and confused little boy. It felt like ASD was taking him one little bit at a time, and I was hanging on to him as tightly as I could.   Finding help for my son proved to be as frustrating as the situation itself.  The thing about autism is that no one can tell you exactly what is going on.  Most of the therapists you encounter know their discipline, but putting together the whole picture especially when you are managing a regressive situation is a challenge to say the least.  There’s a reason they use a puzzle piece as a symbol for autism.  It’s not easy to know what combination of therapies are best for your child.  I’ll address some of that in later posts.

We have come a long way in the last 2 years since we officially got our diagnosis, and I have met some wonderful therapists, teachers, and other families and children facing special needs challenges along the way.  This blog is really for them.  I want everyone to know how amazing these kids on the spectrum are and the incredible gifts they possess and all  they give to the world around them.  I want folks to know how hard kids on the spectrum work on a daily basis to accomplish things that come so easily for the rest of us.  They display an intellect and a tenacity that is impossible to miss.  I want parents to know that they are not alone in their journey.  I want families that encounter special needs kids and especially kids on the autism spectrum to know how critically important they are to helping these kids rediscover and navigate the world around them.  Without that engagement, they cannot take on the effects of  ASD.  We fight to pull them out of that hole and give them tools to overcome the things that inhibit them from enjoying daily life.

I am passionate about this cause because the proper early intervention can turn around a situation that feels hopeless, and in some cases, it can make a parent that feels like they have lost their child feel as though they have gotten their child back.  But more importantly, these children will someday grow into adults, and proactively combatting the effects of ASD is about giving them their lives back.  I picture Jim as a grown man, and I wonder what life will look like for him.  I know that’s an image only God knows, but I am hopeful.  Something tells me that with his sharp intellect, wit, tenacity and kind heart he will get there, and my hope is that ASD doesn’t stand a chance against him.