Another Lesson In Single Autism Mom Land
Filed Under (Single Parenthood) by Estee on 11-08-2010
We hate it when we see our children get sick. When we watch them suffer, all we say is that we wish we could suffer for them. Honestly, watching Adam be ill is one of the hardest things. Yet I know what to do. I know how to take care of him. As a single mom who becomes ill herself I am more at a loss.
After that wonderful weekend in New York with my fellow autism bloggers, I seemed to be functioning fine. Then on Monday evening, all of a sudden, I began to shiver uncontrollably. In the middle of one of Toronto’s hottest summers, I began layering myself with winter socks, sweaters and six blankets. This began to happen when Adam came home from camp and from time spent with his dad and I hadn’t seen Adam for a few days! I had to pull myself together long enough to get food on the table, and ready him for bed. I could hardly read the books and play the games I had planned for his homecoming. Adam’s face was beaming at seeing me and I felt like I was cheating him, even though I knew it couldn’t be helped.
After I got him to sleep, I went to my own bed, layering myself with more blankets and a heating pad, knowing full well I must have a raging fever. Then it suddenly began to hurt when I was breathing in on my right side. I knew I was getting a kidney infection after having one when I was a kid. I have never in my life shivered like that and I knew I should probably go to the E.R. Yet with Adam sleeping, I had to consider if I could make it through the night until I could see my doctor in the morning. The shivering was so bad my muscles began to hurt. I had to start considering my options.
I am an only child. I don’t have siblings to call on for assistance. I have friends who I would call if it really was my last option, as I’m the type who doesn’t like to ask for help unless it’s critical. Instead, I have parents — the loving grandparents of Adam who take him on long walks in our beloved city or some forest path in the country, for subway rides and to places I’m certain I’ve never been. As long as they are here, they are always ready to help Adam and I, always on call, and this is a gift I don’t take for granted. They were eager to come over but I waited a little bit until I could wait no more (because I am stubborn). Dad took me to the E.R. while my mother stayed at my home for Adam. Yet I wonder how I would have gotten to the hospital if I did not have anyone to call in the night for help with Adam. If I was single without children, I would have just called a cab and made it to the hospital myself. It’s not like that when we have children. With autistic children, if this were the daytime, I would also need extra assistance because Adam would have difficulty playing quietly in a room for hours and hours.
It got me thinking about single parenthood and how we all need support. As single aut-moms or dads, we need extra support in times like these precisely because our autistic children need extra assistance as well. It got me thinking about our interdependence and community and how we need to be on call for others as much as we need others on call for us. I don’t know if it’s an only-child thing, but it’s difficult for me to ask for help. I also wonder in all of this, if Individualism may have gone too far, and it’s something that we all know as autistic people and parents of autstic people that we cannot afford. No wo/man is an island, although we seem to think that we should be.
There are writings out there about how we can seek extra supports. Books like More Than A Mom, for parents with special needs children. There are some good resources out there that can help us with ideas. It’s definitely important to create a back-up plan as single parents, for it really does take a community to raise a child, and we need our support systems organized and ready. In the meantime, I’ve not only learned another lesson in my new role as single parent, but I am humbled, if not grateful, that there are people willing to lend a helping hand.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer.Curator of Art. Founder of The Autism Acceptance Project. Mother of Adam. I like to write about our journey, musings, attitudes towards autism.
Several things came to mind when I read this latest post:
1. I’m very sorry to hear that you are not feeling well. I wish you a very speedy recovery! :^)
2. When Adam got home from camp, he might have been in a mode of adjustment where games and activities might have been a little too much for him. The downtime and quiet might have been a good thing for him at the time. (Not that your being sick is a good downtime, but it seems to have had the same effect: less need to be engaged after being at a place where engagement is probably pushed on him day and night)
3. That’s awesome that you care so much for Adam when he’s sick. My mother used to tell us to go to our rooms/beds and not come out until we were better. (She didn’t like cleaning up after us and also did not want to catch it) My brother and I knew how to take medications and which ones worked best by the time we were 6. I recall my dad asking us if we needed anything and we would ask for Neo Citran or Gravol, or whatever was needed. He’d buy it for us and then go back to work. We’d then follow the directions on the package and treat ourselves until we were well. If we had high fevers or something warranted a trip to the ER, then we were taken. Other than that, we were on our own. The idea of someone actually looking after me when I’m sick is an absolutely alien concept! Over the years, I thought it was unusual that parents looked after their kids when they were sick, but now I’m seeing that it was my upbringing that was unusual! :^)
4. I’ve learned in life that having a Plan B is not just a nice concept, but an essential one in all aspects. I wonder if having a network of local parents or neighbours would be helpful for someone in your situation should an emergency arise. Kind of like the “Phone tree” where there is a list of local people willing to help in emergencies and their contact info. When someone needs help, they call the people on the list.
5. I like being an island most times. Throughout my life, depending on other people has either been painful (Lovaas-style ABA institution that I was put in at the age of 2) or disappointing (Too many unreliable people in my life, I think!). Rarely, if ever, has it been a positive experience for me and I can’t imagine having to depend on others for anything! I don’t like having others be too dependent on me either, which is why I don’t have kids or even a dog. However, I do have a plan B. I do have people I could contact if it came right down to it. I don’t have kids, so I do have the advantage of being able to just pick up and go if I need to.
6. I always admire your strength as a parent. You take things in stride and at the end of the day you value your son above all and he knows it. You get the big picture and the love is still there. I don’t have that strength or the patience to handle the high pitched noise of a child’s voice or scream, nor do I like where society is going with regards to schooling and raising children. My child, if I were to have one, would very likely be on the spectrum like me and I know for a fact that I could not handle the BS spouted off by the professionals and such. I’d probably be on the front page of the newspaper accused of homicide or going postal or something at a school or clinic because some idiot decided they know more about autism than my child or me. It’s not yet a good world to raise an autistic child, IMO. They still think it’s behavioural, they won’t look at the whole picture and the “community” around autism (advocates, professionals, etc.) seems to be engaged in this weird war of ideals – they all swear up and down that their view is right and others are wrong. No one looks at the big picture and how it all looks together. No group or professional is any closer to being of real benefit to a person on the spectrum because of that. Only on the individual level do some seem to be helping. With all of society’s talk of “inclusion”, “tolerance”, “Accommodation”, “acceptance”, etc., it seems that the world has grown more intolerant. Doctors are seeing disorders in everyone now and everyone seems to have some sort of mental problem. I have a hard time dealing with it as a married adult with no children. Kudos to you!
Thank you for yet another insightful and well-written post! You’ve given me lots to think about.
Again, I hope you feel better soon! Sending lots of love your way.
Hope you’re better. Much better.
I would say I’ve had to learn to ask for help and to acknowledge that I need it, to do a better job taking care of Charlie. There have been times when I’ve neglected to take care of myself in the name of taking care of him.
As parents of children with disabilities, I think (for me at any rate) that I’m often hesitant to ask for help because I’m so conscious of people seeing me as overwhelmed, as (to their eyes) barely managing to take care of a child with many challenges, as someone to feel sorry for. I’ve wanted to project an image and a persona that ‘I can do it’—to other parents of kids with disabilities as well, teachers, therapists. I think many of us can do it, but we still need others (hard as it can be to admit it).
Again, hope you are feeling much better!
Oh Kristina can I ever relate to that. So much truth in your paragraphs! We don’t want to seem pitiful… I certainly don’t want to look like “crisis girl” having to reach out for help and how that looks (when we want respect not pity).
On the other hand, this is the danger. Perhaps a LOT of parents stop asking for help period, when they need it the most. I’m not just talking sickness here.
I am reminded as well how important it is to remember to take care of myself, my needs, my life, as well as Adam’s and for the sake of happiness in and of itself.
Thanks for your insightful comment, Kristina.
I’m feeling better today. I just have a little buzz from the antibiotic.
This is such an important topic — I’m glad you addressed it.
The issue of resisting asking for help when we need it is real. We want to look like we have it all together.
Sometimes it’s also challenging having access to someone who can adequately care for your child and their unique needs. In our situation, my mother and my MIL are not able to care for my son because they are elderly and never learned his sign language. We have fabulous workers, but they are not always available in emergencies.
When I really think about it, we are quite isolated and I think this is a combination of: awkwardness in asking for help; not knowing families in the immediate neighbourhood with kids with disabilities, who might be more open to providing support (we had one wonderful family who did just this but moved away); lack of availability of workers in emergencies. I do think our culture is too individualistic and has lost many of the natural supports that existed when I was a child. I also think that sometimes we don’t want to let neighbours in to our life for fear that they won’t understand our situation.
I don’t have a child with autism, but with a rare genetic condition and multiple disabilities. Thanks for your piece and I’m glad you’re better.
Louise,
Sometimes I wonder to myself in a world that is so “socially connected” (oh the irony) by Internet, etc., we have become less connected to each other. I don’t know about other people but the one thing that makes me happiest is connecting with others in real time. Funny, because as a result of my online work I also get connected to people in “real time,” AND I’ve had a lot of support from people over the years living in other countries whom I have never yet met in person. Let’s just say, I’m making my way.
I don’t know if it’s more apparent that we lack this connection *because* we have children with special needs or not. A parent with a typical child would have to join the conversation. I mean, I know playdates are arranged, and those are automatic with typical kids. For us, it is not automatic. Playdates are not every weekend for us. We have been invited by people with great intentions — so understanding — but it doesn’t become a continuous thing because Adam is into his own thing and doesn’t “play by the rules” of the other children.
So I wanted to add that to the conversation and also add that our society has changed, also, in a better way. When I was reading your comment, I was thinking of the time when there was a special needs (likely an autistic) boy in my neighbourhood and I was an 8-10 year old girl. The boy hand-flapped and did get upset. He sensed we did understand him and we wanted to go off on our own (yes, I admit this all the time as I am the product of the seventies in this). I remember feeling odd going up to his house (for whatever reason I did I no longer recall — feeling scared, even. As an adult, I completely understand where that all came from, what society believed, and how people with special needs were treated back then. As children, we were never taught to accept others, appreciate them, value them, empathize with them, include them. We were little snots.
When I fast forward to today and I see Adam with other kids it’s not perfect but it’s not like then, either. Adam, who attends a typical camp with an aide worker, is truly adored by his peers. This, I believe, has helped Adam’s social skills in many ways. I know it must be tough on him some days. I know he must feel frustrated. But I also know and am grateful that we live in a time when we as families and special needs individuals will no longer tolerate exclusion and discrimination of any sort. So maybe, like I said, while we’re not quite where we want to be, we are not completely isolated either.
Wow, Estee — glad you’re on the mend, and this is an incredibly important topic. We need to make sure that those in our community who are single heads-of-household without nearby family have people they can rely on for situations like this.
Phil, I agree. I never thought about this stuff UNTIL of course it happened to me. There are so many single parents out there of special needs kids who need back up plans, networks of support, time to pursue their interests, their lives… all in the name of balance and happiness.
Hi Estee — thank you for your comment. I grew up in the 60s and 70s and all through elementary school I never met one child with a disability (physical or developmental). The school I went to had large classes of 35-40 kids each, sometimes two to a grade, and it astonishes me that I was never exposed to even one child. I guess at that time all kids with special needs were in segregated schools.
I think in some ways we as a culture are more inclusive of people with disability/difference, and in other ways not. I think it also depends on the type/degree of disability and the age of the child.
It seems that our definition of success/beauty/achievement as a culture is more narrow than it’s ever been.
I’m glad Adam is enjoying camp. My Ben is also at a sleepover camp — returning tomorrow — and I can’t wait to hear about his adventures. Have a great weekend!