Sunday, November 6, 2011
Tuesday, October 18, 2011
We had a funny moment today at the supermarket. The girls and I had zipped over to pick up a few items before Josh's bus was due to arrive at home. To "help" the girls to be cooperative during the short time that I had to pick up Josh's meds at the grocery store pharmacy, I gave them sugary snacks. By the time we were at the check out counter, they were very energized, outgoing and . . . effervescent!
Monday, October 10, 2011
Tuesday, October 4, 2011
Saturday, September 24, 2011
Friday, September 16, 2011
Thursday, September 1, 2011
Sunday, August 7, 2011
Wednesday, August 3, 2011
Monday, August 1, 2011
Saturday, July 30, 2011
Me: Liam, do you know what it means to have special needs?
Me: It means that some people's bodies or brains don't work the way that most people's do. Have you ever seen people like that?
Liam: Yeah. Some of the kids at my school are like that. They don't talk.
Me: Yes! I just wanted to let you know that Hope's brother is like that. His brain doesnt work as well as yours does. For example, he doesnt know how to speak very well yet. Josh is a little different from other kids his age. I just wanted to tell you that, okay Liam?
(After a few minutes . . .)
Liam: Hope, does your brother annoy you?
Hope: No. My sister does but my brother never does.
Liam: Why not?
Hope: Because I love him the most. First is God, then Jesus, then my brother. Do you know about God?
Liam: Yes, I go to the Unitarian Universalist church where we have helping hands and healthy hearts. I go to the yellow room.
Hope: Well, I am in the big kids church now but my sister with the little kids. Want some gum?
Liam: I love gum. Sometimes I eat a whole bunch of it and I think about when I am going to poop it out.
Tuesday, July 19, 2011
Nothing makes my five year old daughter, Hope, more angry than when Mommy yells at her brother Josh. Today, when I did not get Joshua's beloved frozen mangos for him fast enough (uh, because I was dealing with an OVERFLOWING TOILET!) Josh took a bowl full of bread crusts and crumbs from breakfast and threw it all over our living room rug.
Saturday, July 16, 2011
Joshua woke up this morning with a vision. He wanted to go out and sit in the car in the driveway. Nothing I could do would deter him from his goal; no video, no food, not the offer of snuggling. He wanted to go sit in the car. I even told him that I couldn't put music on in the car because that's been draining my car battery. No matter. The kid just wanted to sit in the car. He even eventually gave up on trying to drag me out there by pulling me by my hand and said, "I want to go to the car." Fine. I try to give him what he wants when he uses his words.
Monday, July 11, 2011
Sunday, June 12, 2011
Right now my wonderful husband is reading to the girls and saying prayers with them. The girls clamor to get to go first, lifting up the very real concerns of their life. "Dear God, I pray for the boo boo on my leg and the line on my butt I got today when I was in the sun without sunscreen . . . " They pray for friends, for our upcoming car trip and for their stuffed animals. Then Alex prays for Joshua, that he would someday be completely healed.
It's a bittersweet thing to hear that. He's modeling for his little girls a belief in and a hope for miracles. I don't do that. I pray that Josh would use his words more and that he would complete his potty training. When I am alone, I pray for other things that I am desperate for, like that he would stop playing with himself in public places. But I don't pray for a complete healing. I just don't have the faith to even ask for that. But I am touched when other people do.
Saturday, June 4, 2011
What’s that called
when you have no idea
that the person you are talking to
doesn’t know what’s in your head?
Joshua’s ever recurring statement
with no subject,
“I want it”
like everything with this kid
happens over and over again.
“I want it”
“I want it”
“I want some”
His response to, “Hi Joshua”
is “Hi Joshua”.
But today comes a surprise connection,
like the sun coming out in a constantly cloudy place.
At the end of an eternal effort
my beautiful son
decides to tell me what he wants
using his words.
“I want Barney video.”
I run to turn it on for him.
Thursday, March 31, 2011
"Is Joshua always going to be special-needs?" Anna asked her question while looking out the window of the back seat of my van.
I wonder what is going on in that four year old brain of hers. How is she processing the life that she has been given to live and the family that God put her in.
"I think probably so, Anna. Why do you ask?"
"Well, is he going to get married?" (Anna has been thinking a lot about marriage and weddings. I began to be concerned about her thinking about such "big girl" stuff until she told me that she has decided that she is going to marry her Daddy.)
"I don't think that Joshua is going to get married, honey."
"Well, who will he live with when he grows up?"
"Probably Daddy and me," I replied.
"Aren't you and Daddy going to be really, really old by the time Joshua grows up?"
I can't remember how I replied but I was so struck by how such deep concerns bubble up in her developing little brain. She's so young. She still draws in stick figures. She's just now mastered recognizing the letters of the alphabet. She spends most of her time in the present, which is filled with immediate impulses and gratification.
Yet, somewhere in there, Anna wonders about her brother and his future.
Everyday there are reminders to me that Anna and her older sister, Hope are being shaped, from the very ground up, by the presence of this different little boy. I was looking through recent pictures this week and noticed that in this one (above), Anna is helping her brother to look at the camera.
Earlier this week we were at Hope's school picking up Hope and another boy who I was giving a ride home. Josh was in the back of the van screaming his head off for no apparent reason. The boy (a very polite and nice kid) had his fingers in his ears and did not look like he was looking forward to sitting in the back with Josh. The girls were already strapped into their booster seats in the middle row. While I put the other boy's backpack into the very back of the van, I saw Anna unstrap herself, pick up her booster, and settle herself into the back seat with Josh. The boy that I was giving a ride to seemed mighty relieved. Later, I asked Anna about why she had done it, whether it was out of concern for the other boy or for Josh. Anna said, "Because I love Joshie, Mommy. He's very special to me."
Oh man. Such sweetness. . . but do I start saving now for therapy for this sweet little girl who feels responsible for her brother at age 4?
Tuesday, February 8, 2011
I can't even remember what goals #2-5 were (probably something about losing weight and working out more-- oh well). Goal #1 was to live and arrange our lives so that we had a good number of people who knew Joshua on a deeper level.
It's so easy to miss out on getting to know Josh. He generally doesn't communicate with words. His auditory sensitivities make many social events impossible for him. He has a rather packed schedule of necessary therapies and medical appointments. He doesn't really care about socializing. His favorite thing in the world is to sit in his room and listen to music by himself. His disabilities are complex. Yes, some people remember that he has autism but only a handful know what Septo-Optic Dysplasia even is or remember that he has this primary diagnosis. There is something so inherently isolating about living with disabilities.
But I have a deep desire for people to, get to know my son. He is such a beautiful little soul. He is an incredible source of joy. He has so much to teach. You just have to have eyes to see and ears to hear. Surely, the blessing of who Joshua is is not just meant for our nuclear family?
So I've kept this goal in my heart and in my prayers-- that by the time I'm 50 years old (and Josh would be 16!) there would be a number of people, and families who have gotten to know some of the complexity, beauty and challenge of who Joshua is.
One of the things we've started to do as a family is to vacation with a couple of other families. My husband has a friend from college who generously loans us his vacation home several times a year so for the past couple of years, we go up to this cabin in the mountains with one family on MLK weekend and another family for a week during the summer.
A few weeks ago, we went up for an extended weekend with one family with whom we are long time friends. Their eldest son, Ben, is 12 and a very sweet kid. Ben has always had a special willingness to hang out with Josh. A few years ago, during an Easter Egg hunt in their backyard, Ben walked around holding Joshua's hand and helping him to find eggs. During our weekend at the cabin, we went for a little hike and, without prompting, Ben took Josh's hand when he sensed that Josh was feeling visually insecure about walking across a bridge. Walking behind them, I noticed this, smiled, and snapped a picture.
The other family that we go to the cabin with also has a son who is twelve, Mark. Mark's mom told me a story the other day that touched me. Apparently, a few of Mark's friends from school were talking about something or someone and saying that it was "retarded". Mark spoke up and told them, "Hey, you shouldn't use that word. Our family has a friend who has special needs and they would not appreciate you using that word like that." I mean, who does this when you are a twelve year old boy? Did I ever speak up for anyone else at all when I was twelve? I don't think so.
Somehow, my son's very presence is teaching people about advocacy and about looking out for unexpressed needs. I love this. How will their experience of knowing Joshua help these two young men to become better students, husbands, dads, bosses or church members? How will being around Josh give them a category for caring for those who are different from the norm?
I also love it when people (and especially other kids) ask me questions about Joshua, his life, and even his disabilities. I like it because it tells me that they see him and are wondering about him. I appreciate the initiative to move a little bit into his/ our world. I feel included, known, and loved.
Monday, February 7, 2011
Right after Christmas, three of us got lice (thanks to an outbreak at my daughter's preschool). Soon after dealing with that, I got sick, the girls got sick, my husband got sick (and has had a horrible cough that kept him up at night for three weeks). Josh has had a stomach bug three times since the new year started (and it's only mid-February)!
I woke up this morning and realized that I might be going insane. I spent most of the weekend at home monitoring Joshua, who had a fever. Due to his medical issues, if we can't control his fever or vomiting then we have to take him to the emergency room to avoid a potentially deadly adrenal crisis. This is somewhat stressful.
Now, I am sitting here at my desk, having sent all three kids off to school . . . but I'm feeling a bit PTSD. Who knows when the next round is going to hit. Why schedule anything at all when all routine is going to go out the window again because someone is going to have to be taken care of all day?
SO, someone out there give me some advice. How does a modern mom weather the winter cold blues with emotional and spiritual strength?