Wednesday, November 4, 2015

I'm A Believer

Monday at 3 o'clock  I suddenly believed. I believed from the core of my soul. Prior to 3 o'clock I would have said I believed and would have thrown information at you in order to make you believe as well. But deep inside where you hide the things you don't want to think about ....I doubted. I doubted that Sensory Processing Disorder was real. I secretly wondered if one day we were going to find out it was all made up, like immunizations and autism.  I doubted myself and my ability to pick quality doctors who would tell me the truth. I still believed that it was my parenting that had messed John up. I believed that it was me that had screwed my own son up so badly he has four separate diagnoses.

And then 3 o'clock  happened.

We needed to leave for John's OT appointment and he was still in his pajamas.  I told John to get dressed in his clean clothes and I walked away.

 He came screaming down the stairs, red faced, hot tears wetting his shirt collar. He was jumping in the air, flopping like a fish out of water, spinning and grabbing, yelling something over and over. Finally I understood: "It hurts."

He was out of control. He would jump and his entire body would arch backwards as his feet left the floor. He was clawing at the inside of his legs and shaking uncontrollably. He started to hit himself in the head. He started pulling on his penis. His face was pulled into a grotesque mask of pain.
 I started trying to get the clothes off of him. In my head I was a frantic fool, repeating,  "Off Off Off. Just get it off off off why doesn't he just tear it all off? Where are the scissors? Can I rip the pants? OFF." Finally I was able get my arms around him and squeeze him long enough that he could take a breath and tell me that he couldn't take the clothes off, because he had to go see Miss Beth, his OT. I suggested he wear his pajama's. That was not acceptable and everything began again.

At some point I just sat back and looked at him. I looked at my perfect and wonderful child and saw the pain he was in.  I saw him pull his beautiful blonde hair. Leave welts on his rosy skin. See his collar turn deep blue form his tears. I saw him curl up in the fetal position on the dirty floor and just sob.  This was my baby. The baby I helped and soothed through feeding therapy, through asthma and pneumonia. The baby I could soothe then. But could not now. This was pure pain, all centering in him, in his body, in his nervous system. This is was John's own personal pain.

And I couldn't fix it. Taking the clothes off meant we weren't going to see Miss Beth. Keeping the clothes on meant we weren't going to see Miss Beth. We couldn't win. I called the office and tried to tell them we'd be late, with John yelling in the background. I started to cry. Here I was, my child needing to come to them - for real- and we can't get there because we are so beyond help. I talked with Miss Beth and she had some suggestions. She talked low and calm to me, asked me to go to a dark room, sit on the floor with him, squeeze as he would tolerate,  and would it be helpful if she wore her pajama's? I already think the world of this young lady, but my respect for her grew ten fold.

I was doing everything right. Nothing I was doing was making it worse or causing it. We were in a dark room, I was barely speaking and when I did it was a whisper. I was holding him tight when he pressed against me and releasing him when he leaned away. I was pounding him on the back the way he likes and offered the swing, weighted blanket, trampoline and chewy. I WAS DOING EVERYTHING AND STILL NOTHING WAS WORKING. This wasn't poor parenting. This was my little boy who desperately wanted to see his OT, but his pants were setting his legs on fire. He was so distraught that he began pulling on his penis; of which he has no memory. This was my child who's legs were on fire but he couldn't wear his pajama's out because that is embarrassing. He couldn't wear shorts because it's now fall.
THIS is not poor parenting.
THIS is not my child wanting control.
THIS is not my child being difficult.

THIS is my child with a Sensory Processing Disorder, along with ADHD, anxiety and Dyslexia.
THIS is what he looks like. THIS is how he feels. THIS is real.
BUT. This isn't WHO he is.
He is the child who suffered on the floor, yet dragged himself to the van and made sure we got to see Miss Beth. She greeted us with warm smiles and soft voice and took us to the smallest room where she knew John would feel most comfortable, even though he normally prefers the largest. She had the lights low and was ready. He was subdued, she respected that. She provided suggestions and helped him into equipment that wrapped against him and gave his body the input it needed. He is the child who pushed through and climbed ladders he couldn't in May. He is the child who dashed up the slide without one misstep. He is the child who designed a series of traps, then maneuvered himself through it in a way he could not have done 3 months ago. He is the child who craves this sensory time he has with Miss Beth and somehow pushed the pain aside long enough to see her, play with here and then come home to quickly shed the painful clothes. Miss Beth did her job. But to me, as she helped my son, it was so very  much more

It was a terrible day. Worse than any day where he 'just' rages. I saw him in pain. Undiluted, uncontrolled pain. And I couldnt' fix it.
And THAT is the worse day.
(And if you are wondering about this OT angel, Miss Beth, she works at All The Difference here in Wilmington. It's the only facility like it in the area and a gift from God)

Wednesday, October 7, 2015

What Homeschooling a Child with Special Needs Means

As  I talk with friends who home-school 'typical' kids, I've come to realize some interesting things. Our days are vastly different. I cannot fathom their days nor them mine.  But I found a new friend who has a son who is incredibly similar to John. And hearing her talk about her struggle and what the day looks like for them made me laugh and tear up with joy. Because I'm not alone.

And I thought I was. 

It was then  I realized I didn't know any of this stuff about home-school and special needs kids before I became a mom that home-schools a kid with special needs. Homeschooling a special needs child was  some vague notion about a mom with a child with Down's Syndrome or Cerebral Palsy. Certainly not me. Oh, how God laughed. There are things I didn't anticipate or even give a thought to in regards to home-school and a special needs child.
What I did not anticipate was a child that was so needy I'd cry with anger and sympathy for myself and empathy for him.  I did not anticipate needing Sensory Breaks in the swing, on the trampoline, in the tent or BodySox. Those breaks eat into our day. And while I *know* that he does so much better when he takes those breaks, it doesn't mean that I have stopped watching the clock and trying to guess when we'll be done. I did not anticipate having to work one on one so much with him that I then worry and feel massive guilt about the time I miss with the girls.

I also never anticipated the sheer amount of guilt I'd harbor. That it would make me scream. That it would make me stand in the shower and sob.
Homeschooling a child with special needs means I wash the same set of clothing and pajama's for 8 months. And when the weather turned cold yesterday I started to sweat and stutter as I tried to casually suggest he wear pants instead of the same pair of shorts he's worn since April.

It means that I get pissed at him every day. Every day. I get angry that he has these needs. Why can't he just wear clothes? Why does he have to swing before, during and after math, science and reading?(Hello Sensory Processing Disorder.) Why can't he just Stop bargaining. Stay at the table. STOP TALKING OH MY LORD JUST STOP TALKING. (Hello ADHD) Why is he asking about lunch/dinner/if I'll wash his clothes/are his pajamas clean? AGAIN. (Hello anxiety.) Why can't I simply read his journal? He truly worked hard on it and now I can read only about half of what he's written. (Hello Dyslexia). And after I've gotten angry at him? I get angry at myself because what kind of monster of a mother gets that upset with her child who cannot help feeling/doing/saying any of things??

ME.I do all that.

Homeschooling a child with special needs has made me needy, lack confidence in all areas of my life and crave acceptance. I want my husband to systematically acknowledge all the things I've throughout the day; from school to house work and dinner. I've gained 15 pounds and need to be affirmed every day that I still look OK. I need every person I know to be completely accepting of my son, what we are doing and all of my choices. I hope fervently that I hear, "Excellent! You're doing such an incredible job! I know this is hard, but you are working on this and it's getting better. I'm so proud/impressed/in awe of you," every time I tell someone about a new therapy we are trying, a change I've seen, if I'm considering or not considering medicine, that essential oils are starting to sound less crazy to me or that I've decided to live on a farm in Greenland because I heard that might help.

And yet.

I do love this. Somehow, amidst all this craziness, all this chaos and all these tears, I see that this is what we're supposed to be doing right now. For unknown reasons (well, to me. God certainly knows), this is what our life is meant to be. At the end of each day I am spent. Emotionally, physically and mentally I'm useless. But if I look back on the day I can see glimpses of what we're fighting for. I see John completing 2 pages of math, accurately, in 10 minutes. I see him taking a Sensory Break when he needs it, not when I demand it. I see Violet grabbing John and squeezing him tight to relax him, then reading his history to him. I see Sarah asking him to play a math game and the two of them having a blast. These are small moments, but I cherish and cling to them as the day ends and I start to worry about the next day.

Nobody told me this stuff. (And there is so much more.) But even if somebody had told me?

We'd still be right here, doing this.

Friday, September 11, 2015


I said I would be honest when I started this blog. I knew honesty can be ugly, and I accept that. But can you?
Can you accept, even embrace what I'm about to tell you? I challenge you to read, put yourself where I am, and listen with an open heart.

I want to quit homeschooling.
I want to put the kids back in a school where the teachers are overwhelmed, tired and underpaid. I want to send my kids off to school each morning with a lunch and a hug, then have a cup of coffee all by myself and drink it in  calm and quiet. I want to clean up the house, maybe eat lunch while sitting down. I want to wander the grocery store alone instead of bolting up and down each isle with three children in tow. I'd like to set the table and serve a nice meal. I'd like to experience a meal where all the dishes are hot and not one is burned or forgotten. I'd like to spend an hour or two helping with homework saying things like,  "Well, your teacher said so. So do it." I'd like to send them off to shower, tuck them in with a book and go watch a movie with my husband, read or knit.
And then I'd like to do it all again the next day.
And I blame these feelings on my son. Which is awful and terrible, and I am well aware I'm going to hell for thinking this.
The past year has been.....horrible. We've been to doctors, psychiatrists, therapists etc, and we finally have diagnoses for John. (yes, diagnoses. As in multiple. Go big or go home.) I'm not going into it all, it's his story, his diagnoses. But I will tell you that each one impacts me physically, mentally and emotionally. I feel as though my brain and body are bruised at the end of the day. Or eleven o'clock in the morning. You know, depending on the day.
We spent most of 2014 searching our way into a diagnosis. I've always said, "Name it and fix it. Or at least know how to attack it." I "know" how to attack this, to some extent. Actually implementing the therapy, well, that's incredibly hard.
Today, after a rough day of tears and screaming - by me- I called my husband and told him to come home, I was leaving.
And I got in the van and I left.
(Violet is 12 and she was here.)
I sat in a parking lot and stared into space, acknowledging all these feelings I have about my kids and homeschool right now.
I have no answers as to how I get past these feelings. I am back in therapy. I started back when I realized that knowing the name of what John has doesn't solve the problem. In fact, it almost makes it worse because now I can read books that tell me exactly what is happening to him and then give me all sorts of wonderful advice on what to do. Except that I have to remember to do it, do it well and be consistent. And do this at Target or a relatives house. You know, places with absolutely no pressure attached to them. I also have to somehow handle that fact that this looks like a behavior issue, like I'm just a crappy parent and can't control my child. I know relatives think this is the case, oh yes, I know. Because you can't misinterpret, "John needs to be disciplined. Kim just needs to get control of him."
 And I'm tired of educating people.
I sound bitter. That's because I am.
And homeschool is really, really, really hard. It's supposed to be, yes, I know this. But crying every day and running away wasn't what I had in mind when we decided to do this.
So, that's it. I'm having some major problems and I want to quit. I'm not going to, I'm not. The me that is sitting here right now knows that this can end. I can't afford the special needs school down the road, public school is simply not an option for us, and John has just started a really great program at the homeschool Christian academy we go to. This is it's first year, created specifically for children with special needs and I have already seen him grow socially. But don't think that when I was sobbing today I cared.
Brutal. Ugly. Raw.