Full disclosure: Life with an autistic child is challenging ...
But as parents, we are blessed with a deep and unconditional love for our child as well as (not always, but often enough) the mental and physical reserves we need to weather what this life - and this child - throws our way.
As for life with an autistic sibling, however ... well, that's a whole 'nother kettle of fish.
To put it plainly ... my greatest joy in life has been being a mother to my boys, but my greatest fear is that I've somehow bungled it. That perhaps I could have expended more - energy, flexibility, confidence, whatever - to have met the needs of ALL my boys better than I have. That when Bill and I faced the challenges of autism parenting, we could have been braver or more open-minded. That we let our fear (and perhaps lack of sleep) make the decisions for us more often than not.
I struggle with guilt - not all the time, but often enough - that so much of our family life has been shaped by the pressures of Earlybird's autism. I worry that our older boys had a childhood that fell short in significant ways, or that they missed out on the life-shaping kinds of experiences their peers probably enjoyed ...
We don't travel. We don't eat out. We rarely go to the movies ... or museums ... or the town parade. They've been to see fireworks ... once.
And that's not to say that we haven't been aware of these omissions (acutely so) but I hesitate to say, "Well, we do our best." Because I'm so afraid maybe we haven't.
We are, however, getting better at this, because finally we are getting the right kind of help and figuring out ways to make things happen that we couldn't before - for Earlybird AND his brothers.
But as for our older two boys ... well, they're young men now. Their childhood is over. And though I feel it was a good one - full of love, togetherness and home-centered joy - there were times of turmoil, too. A lot of tiptoeing around their younger brother's moods. A lot of activities that had to be missed - or seriously curtailed - because Mom and Dad were simply not able to manage them. (Logistically or emotionally speaking, depending on the day.)
How often did they surpress a need - or a dream - because they could see how stretched thin their parents already were?
I've often said our older boys have gained truly great gifts as the brothers of an autistic person. Through the years they've had ample opportunities to practice such virtues as patience and tolerance, compassion and understanding ...
I'm sorry we can't go to the pool party, but Nana can't watch Earlybird for me and there's no way we can take him.
I'm sorry we can't make it to the beach today (even though we've already driven halfway there) but your brother is melting down and we need to turn around.
I'm sorry I can't come inside and mingle with your friends' mothers - EB needs to stay in the car, and therefore, so do I.
They are the least demanding young men you could know. They understand. They accept. They never-ever make us feel we are cheating them. And yet ... still, I worry.
Did we put them first, too? Did we honor their individuality? Did we meet their needs? Or did we rely on their easygoing natures a little too often?
Anther gift they've earned through the years is that they have a keen sense of acceptance - they do not judge. Because they KNOW firsthand that you must always give someone the benefit of the doubt. They know better than anyone that the full story is not always what can be observed at first glance.
And while they may not always be compassionate towards their brother (they are human after all!) they mostly always keep their tempers in check. Because they've understood that they are the older brothers ... they are the example from which Earlybird can learn. Above all, they have been an incredible support to Bill and myself, especially perhaps since the birth of our Little Bear.
And here's the crux of my full disclosure today, the latest worry to niggle at my heart ...
How will Little Bear handle his brother's autism as he grows up? How will it shape his childhood ... his development and personality?
When we found out we were expecting a fourth child, back in October, 2012 ... we were quite surprised - make that shocked - as well as extremely happy. But yes, a little anxious, too! I had so far enjoyed three wonderful pregnancies as a mom on the young side (at 26, 30 and 32). Now as "older parents" having a "geriatric pregnancy" (their words, not mine!) we were understandably a little concerned about some of the risks that come with pregnancies over 40.
There was my health to consider, the baby's of course, and then there was our family itself. As the parents of a child with autism we couldn't help but worry about the potential risks with this next child. We knew he would be special - each and every child is - but would he have special challenges? Older parents have a higher risk of having a child with autism, as do parents who have already had a child on the spectrum ...
When we were feeling brave we'd say, well, we already know how to be autism parents and we know this child will be loved and amazing and everything will be fine no matter what. When we were not feeling brave ... well, it was harder to feel so confident. We worried about how we'd handle the needs of an infant AND those of our special needs son. We worried about practical things like the number of bedrooms in our house and the hours of sleep we wouldn't be getting ...
But I think we worried most of all about how a baby would affect Earlybird. How would he handle this? How would his autism affect his ability to accept and embrace a younger sibling?
Well, Little Bear arrived hale and hearty (after a few agonizing minutes spent blue and being assessed by a team of neonatalogists) and EB surprised us with how easily he both accepted AND embraced his little brother ... but soon enough we found ourselves wondering:
How would Little Bear fit into our special needs family, an environment that on most days could be best defined as, "loving chaos?"
How would Earlybird's autism challenge HIM?
This is a question we're still finding answers to ... especially now that Little Bear is nearly five years old, and just such ... a little person. Aware now - sometimes too aware! - and full of observations and opinions and energy and needs ...
But this post isn't about our answers ... we're still working on those. Every day I am keenly aware that EB's autism is quite apparent to Little Bear - who is also keenly aware that his brother is different. And sometimes that's a good thing ... and sometimes not.
Already Little Bear is learning that EB can't always help his behavior, and that just because EB does (or says) something, doesn't necessarily mean it's ok for him too. Our youngest son is what you'd call - ahem - a very strong-willed child, and so I think this will be a really good thing for Earlybird. Developmentally, EB is still quite young so as LB grows, they can learn from, and with, each other. With the support of their Mom and their Dad, as well as their much older brothers, these two boys will one day be the best of friends ... of that I am sure (mostly).
Moral of the story:
Every child is special and every child has needs ... what a blessing it is to be given such responsibility as parents. What a gift to be so trusted with these beautiful minds and dear hearts.
I sincerely hope that as Little Bear gets older, we only get better at this. That we're able to learn from our mistakes, and remember our strengths, and see past our limitations. That we will model for our boys a level of patience and resilience and compassion that they will emulate as they get older - because one day we'll need to rely on three of our boys to take over for us and see to their special brother's needs. As hard as it is to say this - think this - Bill and I won't always be here and that I think is perhaps the greatest fear of an autism parent ...
Above all I pray we may continue to find the kind of help we need - whether it be from family, friends, therapists, medicine (or most likely a combination of all) - that supports not only Earlybird's progress, but the health and vitality of our family life, too. This is what I hope for most of all.
Well everyone, thanks so much for letting me share this part of my life with you all. I know I rambled on rather long, and I could probably spend another few hours picking back over this post and making it read a little smoother, but alas ... I'm afraid my computer time has reached its end! So for now I'll wish you all well and a peaceful day (or evening) ahead ...
Take care of yourselves and your loved ones, my friends ...
See you all here again very soon ...