My friend Christine wrote this and I begged her to let me share it. Read it ... really.
Frank was a no-nonsense archetypal North Jersey Italian guy. I took to him pretty quickly because the accent and the attitude were pretty reminiscent of my mother’s family. I appreciated that Frank spoke fluent sarcasm and he pretty quickly figured out I was also a native speaker.
I think it’s also the nature of being out of town for a few days, tossed together randomly via belief in a common cause that inspires a fair amount of intense story swapping. We were working a booth at an autism conference, which tends to lead to having a drink after conference hours, which then leads to talking about why we had both found ourselves where we were at that moment.
Frank talked about his son Frankie, who presented with classic, Kanner’s autism (severe). At 15, he was still nonverbal, incontinent, and only seemed calm watching one Barney video, over and over. Alex, who was about 6, had long since mastered the bathroom (at least during the day) and spoke in complete sentences and could articulate needs sometimes, though not consistently. I shared this with Frank, albeit a bit sheepishly. I wasn’t sure where to go with that, or if it should even be mentioned. I knew if I was sick to death of urine-soaked nighttime pull-ups that he, who had been at it twice as long as I had, was obviously and understandably sick to death of constant adult-sized diaper changes. Compounded by the fact that my son was working on social skills and had formed some tentative relationships with some of his (also) high-functioning PDD/Asperger’s classmates, I sometimes felt guilty that I complained about anything relating to Alex’s form of autism, when there were people who were dealing with children much more affected than mine are.
Frank gave my arm a little squeeze and he finally said, “Bless you, Christine – you are going to have a really hard time of it. I take Frankie any day over what you have been handed.”
I just looked at Frank, speechless – probably the only time that weekend that I didn’t have a smartass retort for him. This was not expected and I’m sure something on my face conveyed that he needed to elaborate.
“You know, after 15 years, I am at peace with who Frankie is,” he continued. “He is a pretty happy kid, considering. Simple things make him content and he doesn’t know he’s any different than anyone else. He’s never going to be on his own because he doesn’t talk. He’ll be protected, somewhere, even after I’m gone. He doesn’t have the capacity to understand that society rejects him, and I am eternally grateful for that. God gave me a kid I could handle. I couldn’t handle your kids. I’d hate to know that Frankie understood his difference. Your kids – they are going to know and that is going to be hard on all of you. The rejection – the depression. I couldn’t handle that. And you have two of them, no less. I really do hope your younger one recovers. My daughter brought forth a joy that made the hard parts with Frankie so much more bearable.”
His utter conviction was breath-taking and enviable.
Our paths haven’t crossed again since that weekend five years ago, but Frank is just one of those people I think was placed in my path for a reason. He had an experience that very clearly needed to come to me when it did. I don’t think his attitude is a very common one, but I think I was meant to hear what he had to say. Frank was probably the first person that gave me tacit permission to take a look at my situation and validate that it was alright for me to have less than warm and fuzzy feelings about the Autism/Asperger’s/PDD-I-Don’t-know-for-sure-what-it-is-but-it-sure-ain’t-neurotypical we had been hit with to varying degrees in both of our sons.
I’ll let the parents of profoundly affected children in on a secret that shouldn’t be a secret. Sometimes we feel guilty that our HFA/AS/PDD kids are making progress. We wonder if we should edit that around you. We want our victories to be yours. We want you to have hope. We wonder why the hell our kids talk and yours don’t. And I think it’s precisely because we know on some level where you are because we started there that we sometimes find ourselves self-censoring. Maybe we think we are hiding this facet pretty well, and you already know how conflicted we feel about all of this.
For me – well I don’t really want to forget how we came to this point. What unites me with you, the parent of the profoundly affected child, is how we came to diagnosis. I felt how you felt. I grieved as you did. With every developmental stage not mastered, I too, still deal with new realizations and new grief. Part of the grief process for me was not knowing if we would make progress, just as you too had an uncertain prognosis. No one can see that far ahead when we first come to diagnosis. I was pretty damn scared and my fear was on par with yours. I don’t want to let go of that, not completely, because it helps me push forth the work that we all need done on behalf of the larger community. And what also unites us, too, is we both see the gaps. The gaps of our children with those that are typical. Your gaps are wider than ours are, but we also grieve the gaps… the milestones unmet. We see, too, how much more work needs to be done to get our children to independence and we worry that they will never quite make it. And we worry that because some of our higher functioning children are so skilled that they will fall through the cracks of a system that doesn’t care for the obviously needy very well, either.
I have come to view the autism spectrum as an all encompassing forest, being navigated by many types of travelers – affected individuals, parents, families, therapists and friends. There are many paths through this forest, and they are not all the same. Some of us are traveling through the edges of this forest see patches of sunlight and breaks in the trees, and may stop along the way in a clearing full of wildflowers from time to time. Others are deep within the forest, on a path full of thickets and foliage overhead so thick that sunlight barely filters through to the ground– where strange sounds and limited ability to move make that same, vast forest a truly frightening place to be.
We, as travelers, can be so consumed with our place on the path, that literally – the forest can not be seen for the trees. The experience of the travelers on the edge of the forest is vastly different from those deep within – but it is the same forest.
At some point, our common path on this journey through the woods of autism diverged. Make no mistake, we are still both in the woods, and I can still see you through the trees. If I call out, you are there and I can hear you too. We are talking, back and forth, about what is hard about our path. We are not so far apart, at least not yet. But we are most definitely apart.
Your path has knarled roots that are tripping you up and you are looking ahead in the dark for that big hole you suspect is there. Mine has the same types of pitfalls, perhaps not as many or as challenging, but they are there laying in wait, to trip me up. There are other things that trip me up that you may not ever have to consider, and we have talked enough to know that you’ve got traps that I just won’t have over here.
I suspect your path is harder, but I’m on my own path with its own hardships, so I don’t know. Believe it or not, there are elements of your path that I envy, at least what I can see of your path from my side of the forest. I am on my path with two affected children. You are on your path perhaps with only one. I envy your beautiful, typical, talented daughters and handsome sons who I view as supportive and built in escape valves for you. You will most likely have a wedding to go to and a grandchild to hold from that child, who seems so mature for a mere child. If nothing else, at least right now you have football games and school plays and all sorts of typical to sustain you and give you something to look forward to away from the challenges the other child’s autism presents. Hopefully that same beautiful child will grow into the responsible guardian of your child with autism. I have no guardian or escape valve. I am happy that your child writes, and advocates, and plays baseball, or sings beautifully. You have that bit of normalcy that escapes and evades my family and my path. You can have dreams that I can’t allow myself to have right now – and possibly not ever. I've got some superfically normal looking stuff here, but even normal is hard work and I try not to show too often how hard it is. I am not the first Aspie mom Pretending To Be Normal and I won't be the last.
I don’t know that my path is harder for that reason; I only know that it’s different.
I wonder too, if I keep walking down this path, that the path may split again. And the next time it splits, my children may walk down a different path with others who have Asperger’s while I remain on this one as a parent, stuck between their path and yours on my other flank. If your child never speaks, can you possibly worry that after all of your struggling to help him, that he may grow into an adult that will damn you for trying? By participating in research, or for speaking of the hardships in order to raise awareness? Do you wonder and worry that your desire to help your child may be twisted in his mind as his utter conviction that you really despised him at the root of it? I have often wondered and worried that I might not be to convey to my boys that I would eradicate the autism without wiping out the individual. What if my son comes to believe that his autism is something positive and integral to who he is? With his literal thinking, will he ever be able to understand the nuance?
I often wish I didn’t have to worry about this aspect of it.
I believe that when our adult children with Asperger’s walk their own path, we as parents, fall silent for this reason. We still see you on your path. And we see our children on theirs. We are stuck in the middle, with our own feelings – putting our children first. We still feel as you do, but – we begin to worry and wonder that if we shout our support in your direction, that they will hear it on their path and misinterpret our supportive words at you as an insult towards them. You don’t see their path and they don’t see yours. We see both and we must put them before you. We are stuck between parenting them, and supporting you. And we fear where we will be without your support.
The words I want to give you in support are falling thick on the roof of my mouth like half-dried peanut butter lately. Words evade me lately… I’m still not sure where we are going, but I see the possibilities – I can still see you on your path. But I also see the path on the other side… the side where the people with Asperger’s are walking. I feel my grip on my boys loosening and their vision directed to the other path. I see that divergence ahead. I hold my tongue more because, I still care about the cause, but I put my sons above the cause. What I say matters. What I say can affect them. I need to consider where my sons are going, too. I would not be in the forest with you at all were it not for them.
I have always felt that on some level, we are the bridge between the pro-cure and neuro-diveristy factions of our community…
I’m having a hard time fighting for the forest when the path ahead of me is so uncertain.
But it is the same forest, even if you can’t hear me anymore.
I’m still here.