I came across an article the other day titled, "6 Things You Don't Know About A Special Needs Parent" by Maria Lin, a writer, editor and mother to a special needs boy. I think the article is an important one. As the parent of a special needs boy myself, it validated some of the feelings that I have, knowing that another mother, especially a professionally successful one, has similar feelings. The article is also informative for friends, relatives, acquaintances, professionals and anyone else who may ever come in contact with the parent of a special needs child. I've been thinking about the article since I saw it, and wanted to write some of my own feelings in response to it.
For tonight, I'll start with #1: I am Tired
Boy am I ever. She hit the nail on the head when she wrote "there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs." I have felt this way from very early on with Oliver. It never matters how much sleep I get, I will always be tired. For me, the bulk of my tiredness is from emotional stress. I worry about Oliver a lot, mostly about his happiness, if he's sad, frustrated or if he misses me. Most of the time Oliver is happy to go into his bedroom to "play" with his therapists, but there are days where he just doesn't want to and those days are really difficult. He cries and clings to me when I leave the room. Even though he quickly settles down and works with the therapist I am often paralyzed with anticipatory anxiety, waiting for the crying, the meltdown, the sadness when he gets frustrated or doesn't want to do something. It is just so hard to listen to and when he's having a bad week, it makes me so very weary.
I feel like I do a lot more work in general than many other parents, even during simple and "fun" activities. At the park I have to work hard to keep Oliver corralled to the area our friends are at. If we go to a friend's house, I have to continuously offer him toys or items that might be of interest to him, hoping that he will play for just a little bit longer. At playgroups I have to constantly move around the room with him so I am always within reach. I often feel like I am constantly performing in a 3-ring circus to keep Oliver entertained, and to keep one step ahead of him in an effort to avoid the metldowns. I long for the day when I can just sit on the park bench and watch him play on the jungle gym or be across the room, or even in the next room over, while he happily plays by himself or with friends. I feel like some of this is selfish, and maybe it is, but really, I am just tired. All I can do is simply carry on, surviving, and being led around by the hand, waiting for bedtime.
Tuesday, March 13, 2012
Sunday, February 26, 2012
Current Affairs
It's been ages since I've posted on this blog. I've written a bunch of half-complete stuff, but nothing ever felt post-worthy. For some reason I always think whatever I post has to be some earth-shattering, profoundness when really all I want to say is WTF!?!? Over the months that I have been absent from my blog, there were a lot of times that I wasn't writing anything because Oliver was doing so well. He has come such an amazingly long way since beginning his ABA Therapy with The May Center in June. Despite his great advances, we certainly still struggle, but don't all parents struggle with their kids at times? Of course they do.
There have also been some really difficult times during my absence. Times that I was struggling so much that I wanted to just give up, and just getting out of bed was a huge chore. At times I wanted to write about it, but figured my blog shouldn't be so negative. And the purpose for my blog is supposed to be about Autism. Specifically, what my life is like, and how I cope with having a son with Autism. I can't be successful at maintaining a blog with this limited topic (and by successful I mean posting something interesting and worth reading a couple times a week...I'll never be a true Blogger). I'm realizing that Autism is not my entire life, even though it often seems like it is. I have a lot to say that doesn't pertain at all to Autism, my son and sometimes not even to myself. I enjoy writing and I especially enjoy sharing honesty and not being afraid to say many of the things people wish they could say. So that's it. I'm going to continue forward by writing whatever it is I feel like writing.
Today, what I feel like writing is simply a brief summary of my current state of affairs. So, here it is.
I am tired. Not like I didn't get enough sleep last night tired. This is the kind of tired that doesn't go away with sleep. It is inversely proportional to stress and will only go away with change. Lots and lots of change.
It has been months since Ken and I decided we should divorce, and that we'd both be much happier apart. Unfortunately, he has been out of work all winter which has left us struggling to pay our current bills and rent on one apartment. The possibility of paying for a second apartment is out of the question. So we are stuck. We are forced to live together, and while we are able to maintain a civil living environment, it's not fun or enjoyable for anyone involved. The tension is increasing, the desire for more separateness is increasing. There are days that I am so angry I can't stand it. I am just so stuck and there is no light at the end of the tunnel. I want space and freedom.
Oliver's therapy schedule is pretty intense right now, keeping me home a lot. Here's what he currently does:
Monday:
Speech Therapy 10-11am
ABA Therapy 11:30am-1:30pm
Tuesday:
ABA Therapy 11:30am-1:30pm
Wednesday:
ABA Therapy 9-11am and 11:30am-1:30pm
Thursday:
ABA Therapy 9-11am and 11:30am-1:30pm
Friday:
Early Intervention Playgroup 9am-11:15am
ABA Therapy 11:30am-1:30pm
He usually eats lunch and naps right after his 11:30-1:30 therapy session so we are generally homebound until 4pm most days. With home being my least favorite place to be, it's a recipe for disaster. I'm sad, angry, lonely and jealous of other people's happiness. I'm pissed off that life is so hard and so unfair.
Should I be grateful that I have a warm place to live? Of course. Should I be grateful that my son has made tremendous progress and is thriving? Of course. Should I be grateful that, overall, my life is good (well...it's not bad...)? Of course. And I am. I am grateful for those things and so many others. But today, and right now, I'm mad. One of Oliver's favorite books right now is Mercer Mayer's "I Was So Mad." Every time I read it, all I can think is, "Me too little critter, me too. It's just not fair."
More to come.
There have also been some really difficult times during my absence. Times that I was struggling so much that I wanted to just give up, and just getting out of bed was a huge chore. At times I wanted to write about it, but figured my blog shouldn't be so negative. And the purpose for my blog is supposed to be about Autism. Specifically, what my life is like, and how I cope with having a son with Autism. I can't be successful at maintaining a blog with this limited topic (and by successful I mean posting something interesting and worth reading a couple times a week...I'll never be a true Blogger). I'm realizing that Autism is not my entire life, even though it often seems like it is. I have a lot to say that doesn't pertain at all to Autism, my son and sometimes not even to myself. I enjoy writing and I especially enjoy sharing honesty and not being afraid to say many of the things people wish they could say. So that's it. I'm going to continue forward by writing whatever it is I feel like writing.
Today, what I feel like writing is simply a brief summary of my current state of affairs. So, here it is.
I am tired. Not like I didn't get enough sleep last night tired. This is the kind of tired that doesn't go away with sleep. It is inversely proportional to stress and will only go away with change. Lots and lots of change.
It has been months since Ken and I decided we should divorce, and that we'd both be much happier apart. Unfortunately, he has been out of work all winter which has left us struggling to pay our current bills and rent on one apartment. The possibility of paying for a second apartment is out of the question. So we are stuck. We are forced to live together, and while we are able to maintain a civil living environment, it's not fun or enjoyable for anyone involved. The tension is increasing, the desire for more separateness is increasing. There are days that I am so angry I can't stand it. I am just so stuck and there is no light at the end of the tunnel. I want space and freedom.
Oliver's therapy schedule is pretty intense right now, keeping me home a lot. Here's what he currently does:
Monday:
Speech Therapy 10-11am
ABA Therapy 11:30am-1:30pm
Tuesday:
ABA Therapy 11:30am-1:30pm
Wednesday:
ABA Therapy 9-11am and 11:30am-1:30pm
Thursday:
ABA Therapy 9-11am and 11:30am-1:30pm
Friday:
Early Intervention Playgroup 9am-11:15am
ABA Therapy 11:30am-1:30pm
He usually eats lunch and naps right after his 11:30-1:30 therapy session so we are generally homebound until 4pm most days. With home being my least favorite place to be, it's a recipe for disaster. I'm sad, angry, lonely and jealous of other people's happiness. I'm pissed off that life is so hard and so unfair.
Should I be grateful that I have a warm place to live? Of course. Should I be grateful that my son has made tremendous progress and is thriving? Of course. Should I be grateful that, overall, my life is good (well...it's not bad...)? Of course. And I am. I am grateful for those things and so many others. But today, and right now, I'm mad. One of Oliver's favorite books right now is Mercer Mayer's "I Was So Mad." Every time I read it, all I can think is, "Me too little critter, me too. It's just not fair."
More to come.
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