Thursday, January 15, 2015

Guest Post: A Dog for the Cat

I would like to ask a favor. I don't do many guest posts but this one is important to me. Andrea is a pretty good friend of mine. Even though she is states away, she has been a very big part of my support network. When I needed her, she was there and now she needs us.

A Dog for the Cat
The Cat is an amazing little girl with Asperger's. She has really had a rough go of it lately. She had some bad reactions to meds, and some bad meltdowns. Three days before Christmas I had to make the decision to have the Cat hospitalized. Her behaviors were out of control and try as I might, I just could not keep her safe at home. It broke all of our hearts to make that choice. We were concerned that we may have to send the Cat out of state for long term residential treatment. However with a med wash and some changes at home things are looking up. We will be bringing the Cat home soon.
We are not out of the woods yet. Asperger’s isn’t something that will just go away. But there are ways to make it easier for her. We have made the changes that we can. We now have a visual schedule app for her daily routines. We have slimmed down our expectations, and made it easier for her to keep her environment clean and organized.

We have done what we can at home. But going out in the real world is something we can’t control. Going grocery shopping causes the Cat a lot of anxiety, riding in the car is hard on her ears. School is challenging, but manageable with lots of supports. There is something that can be done to help the Cat navigate these places.

A service dog would help her be able to better navigate her world. The dog will help her navigate social settings, help soothe anxiety, and be a constant companion. There is a safety aspect as well. The dog would be trained to track the Cat as she is a known runner. A service dog would be able to accompany the Cat wherever she goes, school, the store, airplanes, doctor appointments. The Cat would gain a level of independence that she will not have otherwise.

Right now because of her running and SIBs the Cat cannot be left alone, she needs constant supervision. With a service dog, the safety risks are minimal. The dog will be able to help calm the Cat when she is getting agitated, to provide deep pressure and sensory input, to lead the Cat away from environments that are over-stimulating. This dog will change her life.

We have found a wonderful puppy that will be trained to meet all of the Cat's needs, and a wonderful training organization that is free of charge. We are just looking for some help with the upfront costs. Please, whatever you can donate will be so greatly appreciated, and will make a true difference in the life of this sweet girl.

Click here to support a dog for Cat by Andrea.

Saturday, January 10, 2015

More Than A Number

Alex's evaluation results will tell you a lot. He's a 12 year old boy with medical and educational diagnoses of autism. His receptive language is 6 months, while his expressive language is 12 months. His cognitive ability is 6 months, and his physical abilities are between 12 and 18 months with a few unspecified splinter skills at 28 and 36 months.  There's a lot more to the report, 7 +/- pages more, all saying the same thing. All painting the same picture of a boy I don't recognize.

I gave you a list of things to hold for me, to remind me of when the report came in because I knew how hard the report would hit. The night before the meeting, in a fit of frustration and grief, I called that post nothing a bunch of pretty words that were supposed to make me feel better. In those moments, I felt that the progress I saw was a lie, nothing but a list of wishful thinking. I knew what the report would say.

Standing in the school lobby, talking to the school psychologist, there's a new problem with his placement, but it's not one to worry about because with his scores, there's no way he'd be denied placement in this school.

I sat there and listened to his scores, my eyes glued to the page so that I could absorb the information and so the team could not see me holding back tears. I purposely focused on other subjects for the meeting. The scores meant his placement would be accepted and nothing more. I wanted to know if we were keeping his current 1:1 aide and when I would meet his occupational and speech therapists. I wanted to know when to expect the IEP meeting and what would be discussed there. But the big one, the one I am anxious to know is- are we keeping his current 1:1 aide?

I thought I was avoiding the truth, trying to find anything and everything to distract me from the reality of who my son is and what he is capable of. Late Friday night, driving the backroads on a made-up errand, nothing to distract me from my thoughts, I found the truth. I am not upset that this report tells me who Alex is, because it doesn't. I haven't been kidding myself, I know him. But this report does tell me what other people see when they look at him.

Alex's evaluation results will tell you a lot. They will tell you that he doesn't understand what you say to him. They will tell you that he can't tell you anything. They will tell you that he's not able to think like a normal 12 year old boy, his mind is just not there. He's a 6-12 month old baby in a 12 year old boy's body. They will tell you not to expect too much from him, he's just not capable.

When Alex was in Mapaville in Kindergarten, I was in his classroom a lot. I took him to school pretty regularly, I saw his staff with him, they taught me a lot. I will always be thankful for them. In first grade at a new school, I was asked not to bring Alex to school, it upsets his day. In the special school, I could get as far as the front hall. Back at Mapaville now, I'm back in the classroom. I drop him off and pick him up pretty frequently. I see his staff with him, and they talk to me.

The first day I met his staff, the loud one took charge. She was asking about his behaviors, but she wasn't actually asking. She asked if he bites, but instead of using her words, she used the action. That was odd. and uncomfortable. Like Alex wouldn't know what a biting or headbutting motion was or that his behaviors are a secret...I don't know, but it was not ok. Come to find out, she's not his 1:1 aide. Thank God. Alex would not work well with her. She's nice enough and all but it just would not be a good match.

Another day, I took him in for some reason and helped get him to class. I was standing with my back to his kindergarten BFF, talking to him and his aide, when out of the corner of my eye I saw a flash of ruckus. Before I even registered what was going on, I was pushed hard enough to get my attention- not to hurt. I turned around to see why she pushed me, when from across the room, without hardly a look, came a shout of "hands to self!" When I saw her, her face was red and she was visibly agitated. I said, "You look upset, are you ok?" She sat back in her seat and started brushing her hair back from her face, obviously working on calming herself.  I don't know the girl very well, and I don't know her usual behaviors or triggers or what the other girl did or did not do to upset her, but from a stranger's perspective, it felt like all she needed was for her upset to be acknowledged. I don't want someone to see Alex act out and assume the problem is his behavior. All behavior is communication, look for the reason. Get his side of the story.

 His evaluation results will tell you that he's not able to have a side of the story. His results will tell you that he needs to be managed and that his behaviors need to be stopped- not addressed. This is what people see. He's like a puppy that needs to be fed, pottied, played with, and trained.

This is why I love his aide. Not just in comparison to the possibilities, but all on her own. She's a good woman. She talks to Alex like I do. She watches for signs and reasons. She asks me what I think and how I would handle things. She is so awesomely respectful. He's not a baby, and he doesn't seem to be just a job. He is Alex. She is a quiet advocate. She knows the importance of routines and she is determined to meet his needs. I tried to leave with him one day and she softly but firmly asked if I thought he needed to use the bathroom, she asked him if he needed to go potty. She talked both of us through his potty routine, complete with reasons. He didn't do any of the work and I was distracted by our conversation so I tried to leave. She softly but firmly asked me if I would like for him to wash his hands, and asked him if he wanted to wash his hands. She talked him through the process, asking him to do most of the work, she deftly avoided known behaviors without making a big deal out of it. She knows how to work with him and how to direct me with ease.

I love his teacher. I know first impressions are not always accurate (see: this very post), but I jump on them anyway. every time. This one seemed like she was going to be a problem. When Alex came, they got a new classroom. If I remember correctly, she was hired specifically for this class- brand spanking new. And, she's young- I mean young. She's very quiet, and seems timid. My first impression was- fuck. She's proven that, like Alex, looks can be deceiving. She is very capable of controlling her classroom while staying both quiet and respectful. She listens to her students. She talks to them the way a familiar person would. She is watchful and very much aware that they are more than scores and percentiles, they are people.

I will not say the results are wrong. He legitimately earned his scores, but they don't tell the whole story. He is more than a number. He is a whole, complete, perfectly imperfect person. I guess that's the point in me writing and sharing our story, isn't it?

Monday, January 5, 2015

Goofy's Christmas Wish

I worry that the Goofy One is having a hard time with the divorce and the move. He doesn't act like it's a problem, he hasn't asked me to fix it, he seems to be just going along with it but still I worry. He has problems that could be totally unrelated but both his psychiatrist and his counselor ask if it's because of the divorce and I wonder. Before Christmas break, they did Letters to Santa at school. Goofy's made me sad...

Dear Santa,
I love you. Please love me. Do you?
Please do and tell Rudolph I love him.
Love, Goofy.

Santa wrote him back...
Dear Goofy,
I love all of the little boys and girls.
I will surely tell Rudolph that you love him.
Thank you for writing a letter to me,
and I hope you have a very merry Christmas.
From, Santa

I was a little underwhelmed by the young Santa's response so on Christmas Eve night, when the cookies were made and the kids were in bed, Santa wrote Goofy a thank you note for the cookies. He made sure to very carefully print every letter individually because he knows how the Goofy One flips out over cursive writing and destroy all copies of his printing fails so that the Goofy Child could have more of a personal response on Christmas morning.

Santa made sure to tell Goofy that he is loved and to thank him for the cookies. Santa also let Goofy know that Rudolph loved him and was very thankful for his apple. He ate every bite.

The reaction was not exactly what I expected. Goofy was irritated. He's not sure that letter is really from Santa because Santa writes in cursive and he is very annoyed that Rudolph ate the apple he was saving for the homeless man.

Ah, the effing homeless man. If ever there was a reason to doubt... but whether or not the man is really homeless, he is really a pain in my ass. He stands at 141 and 21 every single morning. He is the reason Alex's regional worker now knows that I am mean and don't even care about helping people because he needed help! and he's the reason I felt about two inches tall when Goofy was the one to point out that he needed food because he was hungry.

Fine. I'm sufficiently shamed. The next day, I gave him 75 cents (it's all I had!) and the Goofy One held up traffic to climb up to give him his 25 cents. I'm back in the Child's good graces... until he wanted to give the man his allowance, but I talked him out of it so he decided the last apple was for him... and then Rudolph ate it.

At least Santa loves him, right?

Sunday, January 4, 2015

Alex's Progress

Alex has not had a full educational evaluation since kindergarten. There have been a few smaller evaluations for other reasons, and one to change his educational diagnosis from Mental Retardation to Autism, but not a comprehensive educational evaluation. In order for Alex to stay at Mapaville, he has to be evaluated. A full evaluation that will result in a 7-10 page report. Then there will be an eligibility meeting and a new IEP will be written. Before that happens, I have some things I need to tell you so that you can remind me.

Alex has come so far.

In the past month, he has done so many things that have just wowed me. I'm not sure what the difference is, but I can tell something good is going on.

When we first moved, we visited his mommy pretty regularly because he was out of school for way to fricking long. Leaving mommy's, I'd tell him we were going home now. Every single time, without fail, he'd start crying when we turned south on 21. I couldn't understand why he was crying until it hit me that his "home" was in the other direction. I didn't know he knew how to get "home" from mommy's.

Walking out the front door, I ask Alex to please wait for me while I lock the door. With it being the two of us, I didn't have a choice but to send up a prayer that he wouldn't make it to the stairs first and be ready to bolt after him. The first several times, my full attention was on him as I half-assed the door, ready to run. He stood there and watched my hands. When the door was locked, we could walk to the steps.

Our trailer isn't in the best of shape, there are minor repairs needed here and there from regular living. One of the things that could use some attention is the door knob lock. It's tricky. and wiggly. My boyfriend asked me one day why I didn't just lock the deadbolt- duh. So, I started locking the deadbolt instead of the knob. Alex stood there, watching me lock the door. I locked it and turned away to the stairs. "Ok, it's locked. Here we go." He refused to budge. he walked over to the door and started poking at the lock. I asked him again to come on, and may have gotten a little exasperated. He refused and kept vocalizing at me, turning the door handle, poking the lock, and knocking. He was mad that I locked the wrong lock! I had to explain the broken lock and the deadbolt and show him that the door wouldn't open before we could leave.

Alex fell off of the stairs. The bottom step, but still. He fell directly onto his elbow in the concrete driveway. He was hysterical. I told him that I was taking him to the hospital. He hugged me and calmed down a little, but was still crying. I didn't even look. uh-uh. I don't do broken bones or open wounds. I saw how he fell, I heard the cry, it was good enough for me. By the time we got to the hospital, I was questioning. "Do you even need to see a doctor?" He nodded. Ok. Not sure I should trust it, but ok. I took him in. Taking his shirt off to show people...yeah. He needed to be there. The doctor looked at his arm and ordered x-rays. As she was walking out of the room, Alex started vocalizing at her and reaching for his knee. I tried to stop her, she didn't seem eager, but she stopped. I pulled down his pants, and sure enough, he hurt his knee. Not broken or anything, but scrapes. She wasn't worried, but I was beyond excited- he told the person he needed to tell that he hurt and where!

 I've become pretty desperate in toning down the Goofy One in the evenings. It's been more than out of control. He has a new interest that works in my favor- money. He's figured out that money buys video games and Minecraft toys and $20 bills and he wants it. Walter gets paid for babysitting, the Goofy One gets paid for not driving me to drink (much) and we're happy. Sitting at the kitchen table on payday, I handed Walter his money and handed Goofy his money, Alex starts smacking the table, snapping at me, and making the "gimme" sign. I looked at him and said, "did you earn money?" He looked sad and slumped in his chair. I felt bad so I asked, "were you a good boy this week?" He smiled and nodded so I put the $5 in front of his plate and let him know that it was his. The look on his face was so very worth it. We went to Walmart today and he picked out Hoodwinked. Not so sure that was the movie he wanted, I think I gave him too many choices, but it's the one he ended up with. He fell asleep watching it at bedtime. Did you catch that one? Hoodwinked. He's watching Frozen and Despicable Me 2 and Hoodwinked. He still loves Dora and Blues Clues and Elmo, but he's choosing longer movies with and actual story line!

Progress is progress. Alex is impressive in ways that I never expected and I never thought I could be so proud of the little things or be so certain that it's the little things that matter most. This report will be useful in helping him get the educational placement and program that he needs, it will help him with services after transitioning, it may help with some things at home, but it will not change who he is or take away the progress that he's made.