I have written about how autism moved into our life, almost overnight. Of course, I have written how it affects me as a mother, as a teacher and as a human being. As our lives are now based on a master schedule of concerts, therapies, work and all, we are learning to patch up our bruised hearts and go on with the hard work of parenting two little boys.
My son Connor receives three hours of therapy each week -which is minimal compared to what many parents in the swirl of autism must do. Three hours for us requires deft scheduling.
My son, Ian is getting lost in the shuffle. He was okay with getting to play some computer games in the office for a bit. Occasionally, Tom will be home to play with him. Last week, it was me, Connor, the therapist and Ian. Ian played computer for about five seconds before wandering back into the living room. He sat with me for a bit, watching Connor. He started climbing on chairs, then tried the snack and drink angle for a bit. I brought out a puzzle for him to work on next to me, but Connor was too distracted. I tried putting Ian back on the computer for a bit and he came back out within a few minutes. Finally, he said the words that I should have known were coming.
"Mommy, it's not fair. Why do I always have to play by myself? Why does Connor have to play out here and I can't play too?"
If you heard a shattering sound, that was my heart breaking into a million pieces.
I think back to all of my days as a little kid with no one to play with at home. No brothers (unless you count my brother with no bones) and no sisters. It was lonesome. I remember wondering why I always had to play alone. As I got older, I began to embrace my loneliness and began to enjoy being alone. But, I always wanted two children because it helps fulfill the past and I figured it would ensure that no child of mine would have the same quiet childhood.
Yet, here is my son, surrounded by people and feeling alone. I don't blame myself, my husband or my youngest son. No one person is responsible. We are stretched to capacity.
I think it's autism's fault, quite honestly. But I refuse to fill my life with anger when I cannot do anything about the whys. I am trying to welcome the unwanted and learn the hard lessons with grace. But teaching it to a little boy who is mature beyond his age and knows inequality when he feels it in his heart. That is a lesson I wasn't quite ready to teach.
8 comments:
Just as Linda said, it has been hard for both of our boys to deal with autism. Connor as the one having trouble communicating and Ian as the sibling who has to take a back seat sometimes. I wonder how other parents in our situation deal with this sibling issue?
Ian always warms my heart when he says "Daddy will you play with me?". Sometimes I can't because I have to go to work or out to a gig and that is dissapointing to him. It is quite a felling to have that much love and devotion from such a small person. I hope for the day when Connor will ask me to play with him too.
I was able to be home today for Connor's appointment. Ian and I played "Gadget Guy and Robot Guy" of which only he really knew the rules. Then we did some soccer in the backyard before I switched off with Linda to catch up on Connor's progress with his developmental therapist.
Anyway, we are both going to try to spend as much valuable time with each of our boys... together and separately.
I honestly think all kids go through this, even without the evil A. I remember when my youngest was born and my oldest said he had no one to play with even though we spent extra time with him so he didn't feel that way.
I know it breaks your heart but Ian will be fine, don't worry.
First off- know that you have a picture Thomas, are you going to have a blog too? Hey were you really at the top of Mt Baldy???
was that an epic or heroic hike?
I know just that one time when Ian came to me while I was resting on the couch, with his jacket on holding the soccer ball and asked me if I would take him to the park-it would of killed me to say no to that cute little face! Hang in there! sorry that I don't have anything more profound to say.
Anytime you have a therapy session on Friday afternoon, make sure to leave his seat and I will take him home with me. And NO, I do no mind and YES as always, I love having him to play. He keeps Trevor busy!!! You guys are doing an awesome job.
Your children couldn't want for better parents. It rings in every word both of you write about them, in the effort and the thought, the sensitivity and compassion that is bigger than stress or tiredness or personal frustration. Life always has bumps and sad moments. It doesn't always have love, though. Your children will have an awesome life because it is being built on that strong foundation. Not every child has a parent to whom he can say "I'm lonely," and truly be heard.
Linda, you have poured out the heart of the mothers of children with autism and their siblings.
My daughter loves her big brother and when she was younger always wanted to be able to play with and go to school with him like her friends did their own siblings.
The early years of testing, diagnosis and behavior modification came before she was born or when she was a toddler, too young to understand what was going on.
When she was old enough to understand that her brother wasn't "like her" and other children, she learned to accept him for what he was/is, like Vern and I have.
She's always been protective of him and is always so helpful. At their age now, they do have that typical sibling relationship of brother irritating sister...glad that is one thing that is normal. Heh!
You and Thomas are doing a great job! Hang in there and if you ever need a shoulder/ear, I'm here for you both. *BIG HUGS & SMILES*
~ Laura
That's really such a beautiful story. Your children are so lucky to have two amazingly loving parents.
Linda, I lost access to my email address book (my laptop will not turn on for more than 1 minute at a time). I wanted to let you know that http://foodscout.org is now live! Thanks a million for all your feedback and help with it!
I think for us here, the fact that Maya is in her preschool program when Kurtis has two of his therapy appointments is good as she doesn't feel neglected or rejected then. However, when the speech therapist comes, it is an "after school" appointment -after school hours necessary for the therapist because she works at the local school here. It is rough at times with that therapy because she is also the same speech therapist who worked with Maya and who Maya adores too. But, in our case, sometimes it is good that Maya's attention span at times, flits around a bit, and she's not always wanting to be right there, beside the therapist, ya know. We do try to find ways to occupy Maya as much as possible when she is present and the therapists are here, doing their thing with Kurtis. It's still a tough thing though trying to spread time and attention somewhat equally between children though. As tightly knit as you and Thomas are with the children though, I don't think I would worry that Ian will get overly upset by sharing the spotlight a bit. You seem to do a very good job with both the boys.
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