What Really Needs Doin’

 

It was an overstimulating Halloween function. Michael was doing his talk at everyone thing, but I wasn’t monitoring him like I normally do. I say things such as, “Michael, ask them about their holiday plans” after he spouts all he is going to do and then turns and leaves. No “Excuse me.” No “Hello, my name is Michael. Could I share something with you?” No, “Thanks for listening.” Just conversation blasts at anyone in the room and then a swift departure.

Tonight, I was tending to my other son’s needs. He was dressed in a full purple bodysuit and kept bumping into small children because it was too hard to see through. He was so totally awesome looking and we really had a great time.

At one point, Michael rushed over to tell me something. It came out something like this: “Mommy, this place is great. Nobody knows me and they’re not treating me like I have Asperger’s or even OCD!”

Stunned silence.

Which was OK, because he was already gone.

Shattered heart.

Introspection.

I’m erasing my board tomorrow. My life’s chalk board. I’m not doing something right, so tomorrow I will erase my chalk board and write a new sentence over and over. I think what’s on the board right now is “I will be productive and make sure everything gets done.” “I will be productive and make sure everything gets done.”

Tomorrow, though, I hope to erase that and write something like: “Michael and Mason are the most important people in my life, besides myself, and I honor and cherish them everyday. And then I get stuff done that needs doin’.” “Michael and Mason are the most important people in my life, besides myself, and I honor and cherish them everyday. And then I get stuff done that needs doin’.” “Michael and Mason are the most important people in my life, besides myself, and I honor and cherish them everyday. And then I get stuff done that needs doin’.” “Michael and Mason are the most important people in my life, besides myself, and I honor and cherish them everyday. And then I get stuff done that needs doin’.”

Because that’s what really needs doin’.

I Fell in Love Again . . .

 

I’ve been in a real funk as of late. I’ve been blaming “other people” and judging things and just really moving through a dark phase. So when Michael couldn’t handle going on a field trip this morning and cried loudly in the lobby, where all the other kids were unpacking, I was quite surprised, as you might imagine, that I felt joyful. I hadn’t felt joyful in quite awhile. Here my son was crying as I was trying to explain to the teacher that he couldn’t go in a circle unless she planned to retrace the circle for the field trip (walk around our city area and see the historic sights). There was no plan to retrace the circle which was beyond me . . . . That’s a Michael 101 basic. So I said it wasn’t going to work out and Michael would be with me for the day. No worries for anyone. Michael got in the car, calmed down, and when we got to our first stop, he looked up at me and said, “Mommy, I love you so much.” It was a statement that said, “Thank you for not making me try to handle that feat of nonsymmetry.” Which, he truly could not have handled, even on the heaviest dose of a sedative. It just wouldn’t happen.

He had to come to work with me (wonderfully flexible job on Tuesdays, so all good there). He did my photo errand with me. We had a nice lunch together at home. He went back to work with me. And then we went to walk on the local greenway. It was here that I fell in love again with my son. I’m not sure what it was—the nature, the protectiveness of saving him this morning, the unpressured timing of the day, the alone time we had together, or something else I could never imagine or see. I watched him find a big walking stick. I listened to him laugh as it broke on the second plunge into the ground. I helped him break the next set of walking sticks; he got one for me, too, this time. I saw him learn how to move to his right and lift his 2.5-times-as-tall-as-him-stick so as not to trip passing bikers. I savored the skip in his step that I haven’t seen in quite awhile. He told me he loved me probably five or six times today. And I could fully feel every bit of it. And I felt it for him too.

This life is chronic. And that includes the love and joy and Mama Bear protectiveness that is so ubiquitous.

“This Life Is Chronic.”

“This life is chronic.” That’s what the lady said to me during a class I was taking. She had been a counselor and worked with different-brained children in her previous life and someone introduced us, of course. As we’re talking she says, “This life is chronic.” She didn’t say it twice; I’m just repeating the first sentence again. I didn’t know the actual definition of chronic in that moment, but it sure didn’t sound good to me. I smiled, because I had just met her and didn’t want to interrupt the flow of the conversation by asking what “chronic” meant, and we carried on. I don’t remember much of the conversation, except for that one sentence.

So I looked up the definition online at dictionary.com. Here’s what it says:

chron·ic – adjective

1.constant; habitual; inveterate: a chronic liar.

2.continuing a long time or recurring frequently: a chronic state of civil war.

3.having long had a disease, habit, weakness, or the like: a chronic invalid.

4.(of a disease) having long duration (opposed to acute).

Well, that’s not what I want. I want to walk into a doctor’s office and get this fixed. I sure don’t want to deal with moments like tonight all the time. I don’t want my other son to have to deal with moments like tonight. I don’t want my boyfriend and his daughter to have to deal with moments like tonight. And yet, moments like tonight happen on nights like tonight. Nights that start out beautiful and joyful. I remember the laughter and running around, a little bit.

I will not share about tonight, tonight. I am tired and I would curse a lot and I’m finding that people don’t love curse words. I do, but others don’t, and I still need to curse. It involved three beautiful children and a game named “Tag.” My different-brained son doesn’t play tag, so then why was he in the game? Alert! It went downhill very fast. Several hours later I am here writing this blog post because I need to share. Thank you.

Right now, before I go to bed, I am in need of space and quiet and solitude. I don’t know how long I’ll stay awake. I’m very tired. And I want to sleep, but for my own sanity and mental health, I need to “sit and stare” for a bit longer.

“This life is chronic,” a blogger said to you one night.

Support and Looking Back

I have been on this different-brained journey for Michael’s entire life. He came out with a very clear expectation of how life was going to be. And with that expectation, he was given the gift of communication when things did not go the way he thought it should. That communication includes loud screaming and crying and threats.

I started journaling several years ago to attempt to keep my sanity and create a healthy habit for myself. I also work really hard at maintaining beneficial support systems in my life. Following is an email that I wrote in July 2011, although it seems more likely it was sent in 2010—but my ability for geography and chronologaly (yes, I just made up that awesome word!) is almost nonexistent.

My Asperger’s son who is now eight has had “episodes” of epic proportion as of late. I now have emergency psychiatric hospitals and clinics ready to program into my cell phone. My son, Michael, has threatened suicide over a math problem in the last few months (he was seven at the time). He has screamed at me to “kill him on purpose” because his brother was promised a Frosty from Wendy’s. He threatened to burn down our house. He locked me out of the house a few weeks ago because his brother got to the front door first. He’s eight now.

He has a severe case of whatever-this-is (currently labeled Asperger’s syndrome—form of autism) and it takes over when he can’t make sense of life and feels out of control and completely confused . . . and then it blows out like a candle. It is terrifying, devastating, loud, confusing, and deflating.

He will be getting a psychiatric evaluation as these episodes are escalating in severity of threats. He has not tried to harm himself or burn anything and I really don’t think he wants to . . . I live in constant fear of what will happen next. I have questions that seem to have no answers. I have a son that could potentially be hospitalized (tears) due to his mental condition for safety reasons. How? Why? What to do? What not to do? Rhetorical questions?

When he was one year old, if I didn’t put his shoes on in the order he wanted them on (sock L, sock R, shoe L, shoe R), it would take about fifteen minutes to calm him down from the crying and screaming. I didn’t have another child to compare this behavior to, so it seemed normal, and when describing it, people said hundreds of different things.

The above episode’ are what it looks like at eight years old. I am currently living in fear of what it will look like at ten and twelve. He’s got tools he’s being exposed to in social groups, individual counseling, and occupational therapy. He doesn’t seem to be able to put them into practice as of yet. I honestly don’t know if he’ll ever be able to. What do I honestly know anyway? Hmmm?

I feel that all will be well for moments at a time. Other times I feel overwhelmed with the unknown of where I’m headed. I am softly smiling thinking of all of you, who I feel will hold me while I’m on my journey to the unknown with my son. He’s such an incredible gift and at times I have felt like he’s a living prophet. He’s truly amazing and now I am witnessing an emerging part of him that terrifies me.

 

I received truly enormous support back. As I reread that, it says “I am currently living in fear of what it will look like at ten and twelve.” Well, he’s ten now and I’d love to share what it looks like. He is on a wonderful medication that has calmed his tantrums to an incredible minimum. He has been in therapy for so many years and his “toolkit” for social skills and life skills is chock full of awesome tools that we all use. He totally struggles and he still gets in and out of the car first. If he doesn’t get in and out first, there is a loud, threatening breakdown. But the breakdown doesn’t last as long, and he can sometimes talk his way through them with minimal support. He still hangs on me when he needs grounding, and I am happy to be that for him (a safe coat rack?). So I want to share my celebration of how his maturity and medication and therapeutic practices has created a young ten-year-old boy who is capable of being in loving relationships and can go to school everyday with minimal calls from the teacher.

Know that my life is pretty much devoted to his well-being and the tools I can offer him. We currently have an in-home therapist that is making helpful changes to our way of life and how we relate as a family (me, Michael, who’s ten, and Mason, who’s seven). It’s a work in progress. And I’m thrilled to say that I don’t have emergency psych ward phone numbers in my cell phone anymore. I may still need them, but for right now, I’m not basking in fear. And that is a huge celebration.

“Heaven’s Very Special Child”—A Poem

Someone dear to me gave me this poem. I had tears in my eyes before I got to the end. I wanted to share. I offer this with full respect to all belief systems.

Heaven’s Very Special Child

A meeting was held quite far from earth,

“It’s time again for another birth.”

Said the angels to the Lord above,

“This special child will need much love.”

 

“Their progress may be very slow,

Accomplishments they may not show.

And they’ll require extra care

From the folks they meet down there.”

 

“They may not run or laugh or play,

Their thoughts may seem quite far away.

In many ways they won’t adapt,

And they’ll be known as ‘Handicapped’.”

 

“So let’s be careful where they’re sent.

We want their lives to be content.

Please, Lord, find the parents who

Will do a special job for you.”

 

“They will not realize right away

The leading role they are asked to play.

But with this child sent from above

Comes stronger faith and richer love.”

 

“And soon they’ll know the privilege given

In caring for their special gift from Heaven.

Their precious charge, so meek and mild,

Is heaven’s very special child.”

 

Author Unknown

 

To all of you who are given a child who moves differently from you and others, thank you if you work hard to accept and love and create a healthy space for them and you. If you do not create a safe and healthy space for them and you, please reach out to others and get help.

Opening My Eyes Now

Well, I have to find a school for Michael so he can attend sixth grade next year. Homeschooling is out of the question. We’ve tried it. It didn’t work. I don’t want to do it anyway. I thoroughly enjoy my work and having coffee with friends. 🙂

I found out last week that I’d have to find a school for him. We didn’t know whether his current school would choose to have a 6th grade or not . . . until now. They have made a decision with many sound reasons and I fully agree with the choice for his school to not offer a sixth grade class.

That leaves me in a bit of a pickle though. This past weekend I refused to think about it. When I did think about it, my eyes got all misty and sting-y, so I’d stop thinking about it. Today is Tuesday, and I am starting to think about the possibilities and my eyes aren’t even sting-y. 🙂 Progress. Forward progress and that is a great thing. Next Monday, I will start making phone calls and I will schedule open house visits. For now though, I have eyes at half-mast. I will wait for myself to continue to adjust to the newest task at hand. A task I have done, what feels like, way too many times for a beautiful ten-year-old boy.

School number seven, wherefore art thou?

Suffering

I suffer while it feels like I watch my child suffer on a daily basis. Life is so much for him and his beautiful different brain. Going to the office supply store today turned into a major incident because of some finger page turner thingy-bobs. I wish the finger page turner thingy-bobs didn’t have so much impact on my son, and in effect, on me. But alas, the finger page turner thingy-bobs do in fact impact my son, and therefore they impact me. And it feels like suffering. And it is simply how we move through life and that is the way it is.