The underlying theme of our last blog was, “We want answers!”
On Thursday, May 20th, we got an answer in the form of a formal medical diagnosis for our sweet Josiah.
Autism.
Oh the power that just one word can yield. As with most things, this answer produced more questions. Paul asked Jane Marie, the clinician evaluating Josiah, what this would mean for Josiah’s future. She confirmed one of our deepest fears; something we both had thought about, but didn’t want to hear…that since there isn’t a cure for Autism, chances are that Josiah would not live a typical life. Her words were gentle and sensitive, yet blunt and strong. She said, “Josiah’s future will probably not be what you both have hoped for…he is a complicated little guy because along with being Autistic, his cognitive functioning is quite low. He probably won’t go to college, or get married…he likely will be happy living in a group home with similar peers and may enjoy working regularly at a simple, repetitive type job. I am sorry to tell you this.”
While we knew it in our hearts all along, through years of worry, wonder, and uncertainty, it is still hard to have an expert in the field confirm that one of your children will not lead a normal adult life. Although he will physically grow into adulthood, he may never reach a cognitive level where he can be independent.
If you know me, you know that I don’t do well with the unknown. I have a need to know and to have as much control of my world as possible. So on one hand, this news is positive because now I can deal with this reality and plan my life around concrete answers, verses the last five years when we have lived wondering why he isn’t learning and growing with his peers. On the other hand, it is devastating news that is quite hard to swallow. Paul and I are realizing that we really haven’t ever allowed ourselves to grieve any of this, until last Thursday, when the floodgates opened.
For five years we have traveled on a journey with NO road maps, NO compass, and NO knowledge of our destination. Now that we have a diagnosis, we have a map, but it is quite complicated to read. The journey ahead is full of road construction, detours, and possible dead ends. Upon hearing the diagnosis, we were faced with our first detour…medication.
Josiah started medication the very next day. Jane Marie wants to start slowly and try a combination of two different medications, one to address anxiety, and the other to address impulsivity and inattentiveness. This is an art, not a science, but if his focus and attention to tasks could be improved, then the strides that he could make academically and socially are quite promising. We are anxious about the idea of medicating our seven-year old, especially when you read the side effects, but as his parents, the ones who chose to adopt him, we are charged with doing whatever we can to help him. It is like we are in a maze, and we owe it to him to exhaust all possible routes to lead him out of this confusing mess.
While we are crushed and saddened, we are grateful for honest, straightforward answers, a map, and amazing, generous friends.
Our sweet friends, the Krohns, gave us a gift certificate to a hotel AND stayed at the house with the kids last weekend. What a gift! At first, it was difficult to think of accepting such a generous gift. But in doing so, we were able to experience the love of friends, and we were blessed by their willingness to come along side us in this journey.
There are many others who have surrounded us with encouragement, prayers, and a listening ear. The best gift to us is that people have stay with us through all this. It’s not easy to be friends with a family whose kiddo has special needs. We tend to isolate ourselves because it’s easier to stay in our safe, predictable environment than to risk the consequences of what will happen if we put Josiah into social situations in which we know he struggles. The stress that it causes our family doesn’t seem worth it.
God has truly blessed us with people who have stood by us or in some cases, have even pursued us. The fact is, we aren’t very good at asking for help. It doesn’t come naturally for either one of us, as we both like to be fixers, peacemakers, and self-sufficient. When others need our help, we are happy to help, and yet the thought of asking for help from others seems like we’re inconveniencing them, or that we will need to “pay back” one good deed with another. We convince ourselves to just handle it on our own.
Did I mention that I think Josiah isn’t the only one with special needs? J
Just like Josiah falls somewhere on the Autism Spectrum, Paul and I find ourselves bouncing from one end of the emotional spectrum to the other. We are grateful, and we are crushed. We have struggled for the past few days to look to God. We are angry, but beneath the anger is pure sadness.
I am thankful for Amy Grant’s song, “Better than a Hallelujah”. It is a reminder that God wants us to come to Him no matter what we are feeling, because if the only way to approach God is with a Hallelujah—then our relationship with him is limited to just times of joy.
Here are the words. I added the link to the video. Very Sweet.
God loves a lullaby
In a mother’s tears in the dead of night
Better than a Hallelujah sometimes.
God loves the drunkard;s cry,
The soldier’s plea not to let him die
Better than a Hallelujah sometimes.
We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah.
The woman holding on for life,
The dying man giving up the fight
Are better than a Hallelujah sometimes
The tears of shame for what's been done,
The silence when the words won't come
Are better than a Hallelujah sometimes.
Better than a church bell ringing,
Better than a choir singing out, singing out.
