My ongoing topic of “acceptance” has reached a new level…
Over the last few weeks, I’ve been working on an interesting project about kids with disabilities who have siblings. One important topic I had to cover while interviewing families was the need for lifelong care and financial planning for children with disabilities.
We are SO far behind in this area, however, I did notice something about myself while I was writing about kids who will never be able to live on their own – I’m no longer upset by the idea of my children living with me my entire life. It seems I’ve reached another level of my acceptance of disability.
When I was pregnant, I was so thrilled and excited for my baby girl to arrive, but, as someone who’s spent most of her life putting too much emphasis on independence, I made sure that I did all the things I knew I would most likely not be doing for the next 20 or so years: date nights, romantic getaways, etc. Even before Amelia arrived, I mourned the loss of that child-free time, although I did have a certain excitement thinking, “In 2 years, we’ll be enjoying this with our little girl.” Still, in the back of my head I had this comforting mindset that it wouldn’t last and eventually my kids would be in college and we’d be empty nesting.
That’s why I pushed back when I learned my daughter had Down syndrome, knowing that it often required a lifetime of care. I did the same when Zoe got her autism diagnosis. I thought, not my kids, nope, no way, not, not, NOT!
I know that sounds awful, and honestly? It was. It was, in fact, the height of selfishness.
I guess the realities of life and all it’s little crises made me completely forget about this topic until the last few weeks.
I was reading about an in-law suite for disabled family members, and it struck me as a cool idea – and that made me realize that I’m OK living with my children for as long as they need me. Maybe it’s just a little thing, but it’s important. They are growing and learning and struggling and moving ahead and lagging behind, and I suck at gaging how much support they’ll need. I don’t want to cheat myself out of the hope that somehow they’ll need far less support than anyone can foresee at this time but if they don’t, it’s really and truly good by me, as long as they live happy, healthy lives and do whatever they were made to do.
I’m going to be fully honest – part of this, too, is my faith journey. Being a truly, deep Christian means trusting in God for all things, but most especially the stuff you can’t control. Where they need healing, I will do my best to heal them (I’m sorry but eczema and dark circles under the eyes are NOT signs of perfect health). Where they need therapy and skills to adapt to a functioning life, I will train them. Along the way, there will be things that perhaps I cannot change – I mean, a huge percentage of people with Down syndrome get early onset Alzheimer’s. Can I prevent that? Will there be better research someday soon, can supp’s or homeopathy or detox help? Will there be a medication ready when Amelia’s older? I don’t know, but I’m not going to lie up nights worrying about my girl. I’ve done that before, and I find, oddly enough, that sleep is far better! So I leave it in God’s hands and ask Him every night to lead me in what I *CAN* do, and more importantly, what I’m supposed to be doing to help or heal them. Then I let go all the rest.
I’m wondering what others with kids who probably will need ongoing support feel about acceptance of disability? Are you bitter, like I used to be, upset that your children won’t move on from your home, or do you welcome having them in your home for almost all of your life? Or somewhere in the middle? Let me know in the comments!
Julie Leonardo says
I have now decided that I am totally okay with it. I love my daughters and enjoy them. My youngest will be able to live independently, but my eldest, most likely not. And it’s okay….she’s a cool person who I like looking at everyday. I just want some support so that I can have something of a life in a few years. Other than that, my kids always have a place to stay, regardless of whether or not they’re able to live independently. And just a thought, in a lot of non western societies, kids dont move out until they get married or are financially able to do so.. So kicking the birds out of the nest early is a decidedly cultural thing anyway. So it’s all good to me.
Gina B says
Good point, Julie, about society changing! Of course, they’ll always be welcome here no matter where they live but yea, my kids are pretty cool too 🙂
carrie says
Thank you for your honesty through this struggle! I see my Aunt and Uncle continue to adapt with having a child with autism (now 30) who will always live with them. They, too, have amazing faith in God and are still learning! It’s beautiful to see how they have made it work in their own way, and I’m sure you will do the same!
Gina B says
Thanks, Carrie, that’s really encouraging! Although it DOES make me wish I was a wee bit younger… lol
Lisa says
I really don’t mind them living with me forever, we can alter our home to make it more user-friendly. Just what worries is me is that I am not a young mom. I had my kids at 36 and 38. You know I work for the Arc, well at least a couple of times each year, we get a call from a random family in the county–old parents were caring for a disabled grown child, and the last remaining parent died, neighbors don’t know what to do so they call the Arc. I am in acceptance mode and for the most part am at peace with the cards I’ve been dealt. Still, I can’t live forever and even if I get to be 100, I’m still leaving behind a 60-something year old man who probably cannot care for himself.
Gina B says
True! Even if you could live to 100, would you be able to care for someone – but, no, not a young mom either. I was 37 and 40 when I my kids, and it makes me smack my head to think I waited so long just to marry, because my husband was much younger than me. (Waited for him to grow, ahem…still waiting, lol!)
Noelle (@singerinkitchen) says
May the LORD embrace you Gina and give you supernatural strength in your EVERY day. We have been entrusted with our children and just the other day I told my hubby how much our lives have changed since our children came into our life. It is overwhelming but God mandates it and I truly believe we would be selfish (even more) individuals if we did not have them. You are doing what God has asked you and you are bringing glory to Him. I love your transparency and it humbles me because I am NOT a mother of children with disabilities.
Gina B says
Noelle, thank you so much. You know, it’s funny you write that. When I was first blogging, the early years after Amelia’s diagnosis, when I was in self-pity-depression mode, I got pulled out of it because almost all the moms with kids with special needs who were blogging back then were dealing with things like heart transplants that didn’t go well or childhood leukemia or something terribly life-threatening. My neighbor at the time had a son, my daughter’s age, who for all appearances looked healthy & typically developing, but it wasn’t very likely he’d live too far into adulthood because of his rare heart condition. That put it ALL in perspective for me! An inability to write or count seems trivial when you look at that!
Gina B says
Thank you, Jeanine! Your honesty is touching too. I don’t claim to have the answers for my kids – we are a large family, but we could be tighter…and I’m sure my family would help if we were not around, but I can’t even imagine how to ask, what to say/do to ask people like my nieces & nephews for help when I’m gone. I’m sorry about the guilt, but I’m glad you’re building something great out of your experiences! I wish you both blessings and a great relationship. And yes, I’m far stronger than I ever thought I could be!
Rebecca Whitney says
Gina, I would simply come forward and ask your family to bring you that peace of mind. They may not realize you trust them enough to take on such a responsibility or honor.
Rebecca Whitney says
I have probably always been a “spare parts” or “back-up plan” kinda’ girl; so when I was preggers with my eldest (now, 17 1/2), I started the hunt for a suitable Godparent. My own family is not suitable (we won’t go into that couch trip), so I started seeking a family that resembled my own parenting and lifestyle choices. It took me 3 kids being born, before I found her. She is a single mom and she is awesome! I have also taken the somewhat awkward step of announcing to them both that if I were to be hit by a bus or be struck by lightening, I want she and my beloved husband to date, also making it clear I want my husband to seek a new wife. I said aloud, “obviously, you have excellent taste in partners, choosing me”, lol. When Amanda (our ASD kiddo) came along, I asked her if she would also like to take her on, as well. Her sarcastic “well, duh!” look, was precious. If my husband and I were to kick, she’d get complete control of any and all of our humble possessions, to distribute amongst our 4 daughters, keep, sell or whatever she sees best. We hope to have an actual life insurance policy, here, soon. Until then, we rest our faith in karma and God. I am also on the lookout for a 2’nd Godparent, as a back-up, to her. 😉
As for having Amanda in our home forever, this was always a potentiality, when I found out I was first pregnant with my first. My parents disowned me at the tender age of 20. I think this dramatically impacted my perspective on a parent’s obligation to their offspring. I think we are obliged to be there for our children until we are no longer breathing; and further, if the next form of existence allows. If Amanda had, indeed, not been struck with autism, but cancer or by a car while crossing the street, I would still be expected to care for her for as long as necessary. I wouldn’t put her in a home or tell her, “Good luck, don’t let the door hit you on the way out.”. She didn’t ask for this, and even if she did, she is STILL my kid. I never went through the anger stage that I see some parents go through, regarding having a special needs child that will probably always need their parents’ care, probably also because I’m a fan of the tv show “The Waltons”, (yes, that seems random, I will explain). I grew up on that show and loved how the entire family came and went, as they needed or wanted, from that huge iconic house. I loved that the grandparents were there to impact the development of the great grandchildren. I wanted that for myself. I still want that, for my own legacy. If I want privacy, when Amanda is, say, 30, and my husband and I want to go on a hot date or vacation, alone, I will simply hire someone to come in and babysit her.
Finally, we have been coiffing the other 3 daughters to know they are expected to always look out for each other. We have taken the older 3 aside and asked them to make sure Amanda never lands in a home and to take turns, if need-be. At 17, 15 and 9, they seem complaint; we will have to wait and see. 🙂 I am also hoping my daughters will feel the compassion to take care of me, when I am no longer able to care for myself. That is a huge responsibility that I fear will burden them, in many ways. My husband’s and my goal is to have a large enough estate, that it won’t be that big of a deal; we would have nurses and enough $, they won’t have to struggle.
Gina B says
Never thought of it that way, thanks Rebecca!
Gina B says
Woops, reply went in wrong spot! LOL.. I wasn’t angry, I felt it unfair. Remember, I had Amelia at 37 and knew NO ONE in my extensive family or list of friends with a child with any sort of disability. I had selfish expectations, and I felt bitterly disappointed by God. Of course, NOT knowing anyone made me clueless, as you can see!
My family is tight but distant…my sister’s isn’t, but she’s much older than me, so there’s an aspect of being a single child to this. And my parents have passed – I was a late in life baby, so that truly complicates things. Add to that tons of family that I’ve never even met, and maybe 2 close friends since around college age, and that’s it. So when we cast about for caretakers, it’s truly confusing. But it also means we are all super independent. I barely know my brother’s family, who’s up in Ohio, I’m close with sis, but she’s more than an hour away. Distant makes closeness really hard.
Rebecca Whitney says
It *is* unfair. No denying, there. When I was a little person and dreamed of becoming a Mommy, I never imagined a special needs baby; but who does, really? We have been left with the short straw and there are times I’m left wondering why God feels I, of all people, am capable-enough to be handed such a lofty task. Part of me feels a little ripped off; yet sages have assured me that this demanding challenge is yet an honor and I should feel praised for being entrusted with a child who requires so much more than the standard. Do I challenge this viewpoint or do I kick the dirt and resent the less-than-ubiquitous predicament? Well, that depends on the day. lol. I have noticed a trend, both statistically as well as personally, amongst those of us with ASD kiddos. We all have higher than average IQ’s. This tells me a great deal. One of the comforting conclusions this phenom leads me to is that we are, alas, more capable than the norm to rise to the challenge of this unique mothering role. No, this isn’t fair, but when I consider the alternative, my Amanda being raised by the nitwits that live above us, in our apartment, or by, even worse, my own parents, I shudder at the thought. God doesn’t make mistakes and you have been chosen for this tumultuous task, such as I. :/
As for finding a suitable Godparent (back-up parent, as I like to call it), I don’t think you need to focus exclusively on “blood” family. There are over 7 1/2 billion people on the planet. I know that raising these types of kiddos can be isolating, but if you are able to branch out of your current social circle and introduce yourself to other moms and dads at the playgrounds and in your community, shopping or whatnot, you just may very well come across a kindred spirit. Like I said, it took me many years, but I eventually ran across the perfect “back-up Mom”, for my daughters. I took it up in prayer and that request was eventually answered. We parents of special needs children can think that no one wants to take on such a monumental task, but you may be surprised how many people are eager for the potential task. 🙂
Gina B says
Thanks for sharing that Rebecca, interesting observation about intelligence! But I’ve kicked & screamed about it, and peace is easier – though at one point, it definitely wasn’t. And yes, I’m considering outside, true, but that’s a lot to ask even dear, close friends…and hubby and I don’t agree on friends. At least not right now 🙂 We’ll know when the time is right, I guess. It’s all in God’s hands, though, even their care. Which is REALLY really hard to say and something I need to remind myself of often .