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Our kids have all kinds of special needs, mild to severe. Some of us grieve the loss of our children. We do the very best we can, which often takes a toll on us. We come here to share our feelings with other parents who understand. We're searching for every parent of a child with special needs. Are you hopeful, too? If so, join us!

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Tuesday
16Mar2010

Home Again, Home Again, Jiggity Jig

It seems when I come to HP with typing fingers at the ready each month, my mind is always somewhere in the vicinity of Addie’s school.  Her school is the kind of suburban public school that college undergrads majoring in early childhood or elementary education envision.  This vision gets them through finals and student teaching.  It’s in a small, relatively safe, if somewhat slower community, just at the fringe of a metro area with size and pace enough to satisfy the leisure hours spent outside of a classroom. 

Many, if not most, neighborhood families stroll there from only blocks away, still wiping toothpaste off chins.  The School Choice program has brought yellow school buses from deeper in the city to the morning and afternoon outdoor snapshot, broadening the definition of community indoors.

The few buses that idle in front each morning are an extreme draw for my Addie.  Though I’m not certain she could fully articulate with sign or with her communication device, I have pretty substantiated reason to believe I know of at least 3 reasons for this.  When the glass bus doors are closed, her own sweet reflection is cut clearly into the door on a sunny day.  Nobody loves looking at Addie more than Addie (though many come close).  Second, the highlight of any field trip to date has been the bus ride there and back.  She has scant opportunity to board the revered transport, but really seems to respect the bus in general.  And lastly, one of these buses brings her friend Mike, another brings her friend Nicholas.

There are reasons I love these giant idling sunny colored tubes, too.  I love them because of the freedom of choice they represent, because on them, they bring ethnic, cultural, socio-economic diversity to the building that quite frankly, would not be there otherwise. And might not be in the neighborhood schools these kids would attend were there no Choice.  A cold truth. I love these buses because they bring some of Addie’s friends, because they bring some of my own friends.

Last fall, Addie picked a favorite bus door to admire herself in every morning.  Any given day, a glance to the left of her reflection through the windows reveals three young boys, 6 or 7 years old, as they wait with the driver until school staff comes to get one of Addie's kindergarten classroom pals.  The other two young students stay on, attending the other elementary school in our district.  I don’t really recall exactly how it began, but as Addie kept herself company standing in front of the closed glass doors, I began to keep company with the fellows on the bus. The windows are closed up – they could not hear me and I could not hear them.  To pass the minutes before the bell for all of us, I began counting the little guys in sign language.  “1, 2, 3.”  They mirrored me.  Then I added a few further signs gradually.  “1, 2, 3 boys.”   They mimicked for a few days.  “1,2,3 boys on the yellow bus.”  They giggled and held their hands up signing along.  This was over time, a single new  sign each day.  When we reached our final phrase, they no longer mimicked me, but signed in unison, often being the ones patiently waiting for my attention with their signing hands in the air.

“1,2,3 boys on the yellow bus going to school.”

We did not exchange a single verbal word.  We just signed the same thing each day. They never doubted their understanding of the meaning.  Nor did I.  All of us relished this small ritual interaction. One day, Addie tore herself away from her reflection and signed along with us, giggling.  I could see one young fellow excitedly mouth “we taught her!”  I mouthed back with matched enthusiasm, “No, she taught us!”

The driver of the favored bus forged a liking for Addie, but made the mistake of getting too intimate.  She began opening the doors to exchange waves with Addie, not realizing the smiles thus far have been intended for Addie herself all along, and not actually meant to pass through the glass.  From then on, each morning doors would open as we sidled up. Addie lost interest.  She did not want to twinkle and gleam at the driver; she wanted to twinkle and gleam at herself. 

She picked another bus, this one with tinted thick windows and no chance of making a new set of friends for me.  Balance issues worsened by inattentiveness and a tendency to bolt make it imperative that I stay within radius enough to afford quick reaction time.  Thus, I could not go back to the bus with my chums on it if Addie was to be otherwise engaged.  We remained at the new bus for a few weeks.

Winter fringe benefits intervened with distraction for our girl – snow.  She loves everything about it, particularly munching on it.  My own winter distraction comes from the busy-ness of it, the increased work load and flurry of details. While much of it is happy work, there is an underlying strain of complication and even isolation in the cold season that I must keep at bay.  Watching Addie in the snow helps. So the morning buses and their sweet cargo were disregarded all through the frosty months until this week, when most of our snow was relegated to small, dirty, unsatisfying piles.  First thing Monday morning, Addie determined she and I would return to the buses. 

Still, I didn't dare hope.

She led us directly to the original bus, to our bus.  It was still chilly enough that the driver did not want to prop the doors open, so Addie got to enjoy her shiny reflection in the glass of the doors again.  To her, all was as it should be.

I stood bouncing on my toes peeking in the windows, waiting for the 3 boys in the bus to disengage from their rowdiness and, what?  Come back to me.  Yeah, probably that.  One fellow looked up and out.   The sudden happy rounding of his eyes felt like a strong warm gust ushering me in. I heard my own quiet throaty joyful sound.  He quickly rallied the others.  Within seconds, there were 3 expectant moon faces mere millimeters from the windows in glad anticipation, 6 poised hands in the air, forming the initial hand shapes of our common mantra.

1, 2, 3 boys on the yellow bus, going to school.

The 3 boys, who had not forgotten even one nuance of our sentence in the 3 month hiatus, led me through the chant.

I was home again.  Home in hope and promise and possibility.  Home in communicating in alternate ways.  Home in the simplicity of relationships across age, cultural background, interest, ability.  At home in seeing things for what they are, not for what they are deemed through judgment.  At home in the belief that there is a default state of connection between people….

… just because they are people.

Addie and her sister built this home for me.  And in times when I wander from it, when I cannot see my return path clearly, they always lead me back.

http://www.farmerjohncheeseandotherjoy.blogspot.com/

Sunday
14Mar2010

The Soundtrack of Our Life

There are so many things about my autistic son, Jack, that I absolutely adore. He is smart, he is cuddly, he loving and unique. He has a wonderful way of seeing the world that both amazes me and makes me laugh.

One of the things that entertains me to no end, however, is his constant humming. I am always aware of what he is currently obsessing on based on the tune coming from his pursed lips.

He was really into Star Wars for a while, so I would hear Darth Vader's theme music floating around Jack as he absentmindedly sat in the car or did his homework. Then he was into Harry Potter, so he would hum a pitch perfect rendition of the Harry Potter music while playing with his Legos.

He is currently very interested in Super Mario Bros. Wii and will now hum that all day long. It is absolutely fascinating to me how he picks this music up. I barely notice it, but he hears it, appreciates it, and then replicates it.

He even changes the music based on which level of the game he is thinking about. Each level has a different tune. Jack knows this and has figured out how to hum each of them. I will ask him what he is humming and he will tell me, "Super Mario Bros. Wii world three."

I am especially astounded by this because no one in my family is a musical person. I think I might actually be tone deaf. I appreciate music, but am incapable of reproducing the nuances of voice, rhythm, and tone that he can. For Jack, this is intuitive.

I'm sure the humming annoys some people. I am actually a little surprised that it doesn't bother me as well. I have a lot of sensory issues, sound being one of my biggest triggers. But Jack's adorable little voice doesn't bother me at all. In fact, I welcome it.

It is as if we are all living our lives and he is providing our theme music. Not everyone gets to live with a built-in soundtrack. I truly enjoy the fact that we get to go about our daily business with our own personal instrumentalist.

Stimey blogs about her life at her personal blog, Stimeyland. She runs an autism events website for Montgomery County, Maryland at AutMont and writes a column about autism called Autism Unexpected for the Washington Times Communities.


Saturday
13Mar2010

Please Participate in This Study

Researchers at Claremont Graduate University and Harvey Mudd College invite you to participate in a research study investigating the well being and support-seeking of caregivers of children with special needs, of all ages and types. This research is being conducted to learn more about the nature of caregiving tasks and the impact of those tasks on well-being. The goal of their research is to bring about an understanding of the joys and the challenges that come with raising special needs children, and ultimately to help caregivers have the most positive experiences possible.

Participants will be eligible for chances to win gift cards up to $100. More information about and instructions for participation can be found at: http://www.surveymonkey.com/s/5QS6MTG

Saturday
13Mar2010

Breathe in and picture the word "LET " Breathe out and see "GO "

These are the words my yoga teacher spoke as she began class a few weeks ago. All I could think was I soooo need to be here! “Let it go” I say it often. What about you? Are you good at letting things go? It is wise advice but hard to follow.

“When I let go of what I am, I become what I might be”

Everyday I remind myself to practice letting go. If I get annoyed by petty problems, I try to remind myself that focusing on little irritations takes away from attending to the more positive aspects of my life. When I devote precious energy to silly irritations, I cannot use it elsewhere for much better purposes. When I sit back and track my thoughts, I understand how easily I am distracted by inconsequential thoughts.

I know that I have a lot of company in finding it difficult to "let go." Here are some tips for all of us.

*Ask yourself if it helps you to ruminate over this event or are you trying to solve some experience in the past and are reliving the past?

*Let go of “being right”. Realize that you may cling to things because they might make you feel that you have the moral high ground. It gives you a certain sense of satisfaction but does it serve a purpose? Does this other person care if you are right? Does anyone but you care if you are right?

*Understand that "Letting Go" takes practice. Things come up and do your best to let it go. As you repeat this process you will become more and more open to letting things go. You can start practicing today! It is pretty common that whatever you have let go will show up in your thoughts again. And that’s ok. Just let it go each time it shows up. It will quietly vanish over time.

*Accept reality - things are what they are.

*Let go of negative, petty and unimportant stuff.

“If you treat every situation as a life and death matter, you’ll die a lot of times.”

Dean Smith

You know what is truly important to you - don’t waste your time on the rest.
Friday
12Mar2010

Numb

Around this time last month, I was all sorts of cheeky. My son was hospitalized for mental health issues and I couldn't stop making jokes, looking at the lighter side, and distracting myself from what was really going on.

Now, a month later, it's time to go back. After spending the month of February in the hospital, things still aren't right. He's going back today, and today I feel numb about it. I'm not sad, not angry, not anything. It is what it is. I hope this time around I don't try to mask how I feel. Numb is better than in hiding, I guess. So I'm making progress.

To be quite honest, I feel like the whole hospitalization last month was a failure because I didn't fully participate in the process. I spent so much time trying to figure out what kind of face cream the psychiatrist was using instead of actually listening to her, that maybe I missed some things. Or maybe I didn't press upon her what our needs were. Maybe that's why he has to go back now.

Only, that's not entirely true. I did tell them what was going on in our house, and I think they refused to listen to me. I hate hospitals and doctors because of that. Are there any attending docs that actually listen to their patients? Any?

The family physicians and pediatricians have to listen. Otherwise word on the street is "Dr. So-and-so totally didn't listen to me, and I'm switching doctors!" I can't switch the doc assigned to our case in the hospital. It's their call.

So we're going back. To a different hospital. At the suggestion of my son's psychologist at school. I was happy that he helped me to think straight. Getting a second opinion makes sense by me, my husband, his therapists. Something is still not right with my son, E-Niner, and we need to address it.

He no longer sleeps through the night. He no longer really sleeps. He's vigilant. Waiting for something to happen. For a sound to come. For someone to move. And then things do happen. Fish tails appear from nowhere. Ghosts start climbing our stairs. Characters from video games float in his room. And there are sounds he hears that no one else can. Either that, or I get slapped in the face, kicked in the back, bitten on my leg, screamed in my ear. So pick your poison -- hallucinations or aggression. All of it sucks. And none of it involves any shut-eye.

Last night, both my husband and I slept in his room. Both of us were there, and it was still not enough comfort for him. It's as though I need to crawl into his body and sleep for him. If I could do it, I would. I hate that physics limits us. Shit. I'm getting cheeky again.

I'm cheeky and I'm pissed as all get-out. Not sure why anger hasn't hit me yet in this way, but I'm pissed. I'm pissed that all this baloney takes away from ME, personally. Yeah, yeah. I did my grieving that my son has a mental illness; I got mad about it; I spent a long time in the Land of Not Fair. It took time, but I accept it. I'm willing to do whatever it takes to make his life as full as possible.

I sit here though, and realize, that "whatever it takes" means a TON of self-sacrifice. I'm resentful about that. Pissed-off. I think about where my life would be without ADHD, Anxiety and Psychotic Features. I see that person happier, feeling successful, feeling like an awesome mom. I could go to the grocery store on a whim. Hell, I could go to freaking FRANCE on a whim. But now? Now, I can't even make it out on a Saturday night around the corner without getting the phone call to "Come quick!"

I'm going to be absolutely honest here -- you are all very nice people and everything -- but I am actually really pissy that my entire social life for weeks on end is ONLINE. Yes, I've said it. Hopeful Parents and my own blog are where I go to party these days. Woo-Freaking-Hoo! If you could see me right now, I'd be dancing on the bar.

It's too bad virtual wine has a full bouquet of...NOTHING.

I want my life back. I want to be able to schedule a dentist appointment, as I did today, and not have to cancel it for the fifth time in a row (I kid you not) because of a crisis. I'd like to be able to schedule time to go to the gym, and not have it contingent upon whether I get a solid two hours sleep in a row at any given point during the night. I'd like to be able to carve out an hour each day to devote to writing. I'd like to be able to do my singing lessons again -- and my acting classes. I just want to be me, and I feel so squashed!

It's a choice, I know. I could disengage and do my own thing. But that would feel so much worse. I love my son more than dental appointments and sleep and the arts. I love him more than any thing and I maybe even love him more than myself. I must, otherwise how could I continue to allow my interests and passions to fall away? But I'm still pissed about it.

And maybe, not so numb anymore.