Friday, March 28, 2014

Reminiscing... Change can be a good thing.

I have absolutely nothing to talk about and I'm loving it. I would like to keep it that way for a bit, but I know next week starts a whole bunch of stuff. Autism Awareness Month, Autism Awareness Day, A Day of Remembrance, meetings for Alex's sister and Goofy, PTA meetings (Thank God, I'm looking forward to that one.) and I don't even know... but that's next week. Today, I have nothing.

I've been thinking a lot lately. Remembering. Time flies, doesn't it? Time flies and things change.

My Goofy One is as wild as they come. Even on medication, the boy is a force to be reckoned with. Walking anywhere with him is dangerous. He's so busy observing things or spinning in circles that he doesn't watch where he's going. He runs into things, runs into people, and wanders off. There's never a plan, he just goes with the flow, follows the focus of his attention from thing to thing or person to person. Thursday evening, we had an Occupational Therapy appointment. OT is a big deal for him and he is paranoid about being late. Our first day in the waiting room, there was a boy there with us, after quite a long time, the OT came out to call Goofy and saw the boy. The boy had been late for his appointment so he missed his therapy time- she could not see him that day because she had an appointment with Goofy. This made an impact. We can never be late. So, we get there early enough that we don't have to rush, we're just moseying along from the car to the door when it hits me- the Goofy Child is walking beside me. He's not spinning, not dawdling, not bolting, I don't even have a hand on him. We are walking nicely, side by side from the car to the building. I'm shocked at this realization, when did that happen? When did he start walking nicely? It must be all of the practice he's getting at school, and the other kids that show him how it's done. I smile at my boy, "I like that you are walking next to me, thank you." He gives me an odd look and we continue in to his appointment, right on schedule- 10 minutes early.

Our kitchen scissors disappeared. I may have put them up, that's never good, but anyway... My husband bought oranges when he went to the store this week. Alex spotted the bag and when he was unsuccessful in emptying the bag onto the floor, threw the bag at me to let me know he wanted one. Alex chokes on food that needs to be chewed so I usually separate the orange and use the scissors to cut the sections into bite sized pieces. With no scissors, that gets a lot more difficult but when Alex actually makes a request, I don't like to tell him no because he doesn't make requests. He doesn't communicate his needs or desires in any way, so we'll figure it out. I peel the orange and section it out. I hold the piece while he takes a bite. He's having a hard time biting the orange, he's smooshing it and has juice running down his face and front, and my hand and arm. We're both drenched. "You have to bite it, buddy." "With your teeth." "No, BITE it." "Come on, you had no trouble biting me last night!" As soon as I said the last one, he lets out a hoot of laughter. Looking at him with the orange still gripped in his mouth, juice running down his face and my hand while he laughs at a joke, I have to laugh along with him. This moment was beautiful.

I can't give Alex a bath. He takes a bath to play in the water with his toys, I let the water out and then open the curtain to shower him with the hand held shower head because he will splash me while laughing his ass off if I try to open the curtain before the water is gone. Last night, I was getting a little impatient with how slow the water seemed to be leaving the tub because I wanted to go to bed. The water was halfway out when I peeked behind the curtain and asked, "if I open the curtain, are you going to splash me?" *slight smile* *nod* *starts kicking the water* Ok, then. 1/4 of the water is left, "how about now? Can I open it now?" "no wan' to." *sigh* fine. There's less than an inch left by the time he lets me open the curtain to shower him. Getting him out and drying him off, the boy is chattering a mile a minute...
"Goodbye, goodbye. School bus."
"No, buddy. First goodnight goodnight, Then school bus."
"No wan' to. Goodbye goodbye. School bus."
"No, buddy. First goodnight goodnight, Then school bus."
This argument has been going every night for months. I'm loving it. This is the first year he's been interested in communicating regularly. This is the first year that he's really wanted to interact with me. Looking at how far he's come in the past few years, I'm amazed.

 These boys, oh, they had me so mad the other day. Last week was spring break and looking at the house, you could tell. I opened the dishwasher to see if they needed to be washed or put away... you would not believe the amount of food all over these dishes! Walter had been the one to load it so I yelled for Walter. "Boy, you are almost 14 years old, it's about damned time you learn to load a dishwasher." I'm standing there, talking him through each dish- rinsing them and putting them in the correct places when the Goofy Child gets his bossiness going, "Walter, when you get done with that, you need to take the trash out because the trash needs to be taken out." Honey, Walter just graduated to dishes, get your shoes on. Then it's Walter's turn to laugh at the Goofy One for making the wonderful decision to open his mouth while mom's PMSing. A week later, Goofy's still taking trash out, and Walter's still doing dishes. Watching the little one take a half filled trash bag that's half his size across the yard and put it in the trash bin is a good feeling. Watching clean dishes come out of the dishwasher is even better. Goofy takes pride in his new job and Walter is making sure he fully rinses his dish as soon as he uses it :)

Looking at this bunch, I'm not sure I can legitimately call them my legion of evil anymore. They're not hell bent on causing the destruction of the world or the collapse of society anymore. Might not be as entertaining, but I think this is change I can handle.

Monday, March 24, 2014

A rough day and a wandering event...

Today was the first day back to school after spring break. After having these heathens home for an entire week, I was ready.

This morning, I hit the snooze one too many times before getting up to get Alex ready. We have a new song to sing in the morning at wake up time, it goes like this: "school bus, school bus, yeah, yeah, yeah!" We sang the song and giggled about where he was going as I got him dressed. At 7:40, my alarm went off and we headed to the front porch to wait for the school bus. He happy stimmed all the way across the yard and met his bus driver and aide with a big smile and a "hi, there!"

I smiled walking back from the bus stop and stood on the front porch for a few minutes longer for the chance to heckle the middle schoolers on the way to their bus stop.

I came in and started the Goofy Child's count down. "30 minutes until your bus comes."

I sat at the computer to check my stuff and things got away from me. At 8:04, I realized there was an eerie absence of sound. My heart stops. Oh, God, where's Alex? I looked up at his room, where the gate was open- meaning he wasn't still asleep. Yes, he sleeps late, sorry, but he does. I start to jump up to check the doors when I remember he went to school today.

I put the Goofy One on his bus and come home. I like to relax in the mornings before I get to work. Usually, it's the computer. I read blogs or play games or follow threads in groups. and out of nowhere, my heart stops. Where is Alex?

I come home from running errands with my husband. Standing in the kitchen, I can tell something's wrong. My chest fills with dread, Where is Alex?

I come in from smoking, I find my husband and Thing1 in the kitchen. The front door is open. My heart stops. It's ok, He's at school.

Today, I was invited to a Facebook event, Candle Light Vigil for Autistic Children Who Lost Their Lives After Wandering. This is hard for me because without constant vigilance, and sometimes even in spite of constant vigilance, there is a very large possibility that Alex could end up here. We've already had so many close calls. Too close. Looking at these children's faces, knowing the stories since I followed a lot of them as they were happening... I ache for these children, for their parents, and I am terrified for Alex.

It gets to be time to get the kids, I meet the Goofy Child's bus and talk to him on the way home. I send him inside while I wait for Alex. 3:53. 3:54. 3:55. Where is Alex? I sent him to school. 3:56. I'm sure I sent him to school. 3:57. Was that today? For sure today? 3:58. Did I just forget I was supposed to watch him? When could I have lost him? 3:59. The nurse called about impetigo. That was today. 4:00. The bus was late. I walk him in the house, asking how his day was and if he had fun.

It's supper time and Alex can't be trusted around cooking food. Last time I tried that, I accidentally backhanded him in the mouth trying to keep his hand out of a pot of boiling water. Never again. When we are cooking, Alex is behind a gate. Today, he's in the living room with Walter.

While my husband cooks and Walter hangs with Alex, I go smoke. I come in and start to check on Alex when my husband distracts me with an empty basket. I take the basket downstairs to switch the laundry before coming back up. I check the gate, it's open.

"Where is Alex?" "I don't know," he says. I can tell from the smug it's your child, you should know where he is smirk on his face that Walter knows where he is and he thinks I'm either being an irresponsible or ridiculously overprotective mother. I ask again with more emphasis (meaning with additional words) where Alex is. Walter, still being his smug teenage self, gives me the same answer. "I don't know." I lost it. It's not funny, it's not irresponsibility, it's not overprotectiveness, it's real.

It is a real, literal life and death situation.

I completely lost it. Telling him the statistics, the children, the stories. I made him put faces with the names as I told him how each and every one of them died after wandering away from their home because for two seconds, no one knew where they were. It's not funny, it's not irresponsibility, it's not ridiculously overprotective, it's our life. It could cost Alex's life. My husband came in and tried to get me to calm down, which made it even worse. He said I should know where Alex is, Alex didn't want to be in the living room, he wanted to go to his room. He said I take things too far, and I lost it on him. It's not too far. Somewhere they need to understand how real the danger is.

Then I went outside and cried like a baby.

I cried for Alex, I cried for me, I cried for Walter. I cried for these children, their families, and the total unfairness of all of it. I cried for the lack of understanding, the judgment that each and every one of them face when their children wander. The question is always, "where were you?" Sometimes, the answer is I just took the basket downstairs. Sometimes, the answer is no one took me seriously.

On April 1, 2014, please use this graphic and spread it as far and as wide as you can. Post it to your wall, use it as your avatar, post it to your friends' walls and group and pages, tweet it, pin it, do whatever you can think of so that people will remember the children who have died after an elopement.
"A note: This event is not about placing blame or even to talk about solutions.
The sole purpose of what I created this for is to simply
remember the children who have died."

Tuesday, March 18, 2014

The Purpose of Raising Awareness

April is Autism Awareness Month. April 2nd is World Autism Awareness Day.

Over my years of blogging my views on this have changed. The first year I was excited. I couldn't wait to celebrate my son, to share him with the world and for them to see how wonderful he is. I thought I could make a difference, change the world in 30 days.

The second year, I was discouraged but determined. Maybe my efforts online were wasted, raising awareness among the already very much aware because no one outside of our world really cares. It doesn't effect you until you live it, but I thought I could raise awareness in the real world, I just had to figure out what to do. and I saw how little the world outside of the online autism community really cares.

This year, I'm just pissed off.

I'm sitting here watching the same arguments that I watch every year- light it up blue vs the rainbow, whether or not the puzzle piece should be the symbol of autism, etc. Superficial bullcrap that means absolutely nothing, that accomplishes absolutely nothing. Every year we have this same issue and I have to shake my head at the absurdity of taking three entire meetings just to write a mission statement while never discussing the reason we're here. When are we going to get past the unimportant details and get to the reason we need awareness?

Bill McClellan wrote an article in the St Louis Post Dispatch about a woman named Carla and her parents and their difficulties in finding a place for Carla to go after graduation. Now, here's a place that takes the high-functioning vs low functioning argument and explains why there is a difference and why that difference is important. There are work opportunities for the higher functioning adults- sheltered workshops and such, but the county decided our lower functioning- or more profoundly affected- individuals don't really matter, they are not worth the investment. Now, Alex is only 11 but this matters to me a lot because, in addition to the young adults who are transitioning out of school every year with nowhere to go, Alex will be there soon. If there is no money today, how is that going to change tomorrow unless we do something now?

I know you are all familiar with Avonte Oquendo, the teen who wandered away from his school and was later partially found in a nearby river. I know you are all familiar with Mikaela Lynch, the 9 year old who wandered away from her home and was later found in a nearby creek. I know you are familiar with these children and so many more, more than I can possibly name. Every week I see new notices of autistic children who are missing from all over the country in my newsfeed. Every week I see parents who are devastated, begging for help.

Every week I see new stories of school abuse. The most recent one that comes to mind is Andrew Ashline. When it gets to the point that you aren't phased by stories about a teacher slapping an autistic child in the back of her head because you've heard worse more frequently than to make it common, there's a problem.

Every week there are stories of horrific bulling. My brother recently shared a story with me that I had been avoiding about 2 teen girls terrorizing and torturing an autistic boy because he was horrified by the story. All I can do is shake my head because our children face this every day. It's not always quite so obvious, but it's always horrific. Blue is one of many children and teens with autism who go to school and have to figure out how to deal with daily harassment on his own because the zero tolerance policy is bullshit. Our children are hurting, a lot more than you would expect are suicidal. I hear the stories and it breaks my heart. All they want is to be safe.

Our children are being murdered by parents who just can't take it anymore or parents who are just sick. I know you know of Alex Spourdalakis and Issy Stapleton. They are just two of way too damned many. The ASAN says it best in their thank you for the support in the March 1st day of mourning.

They are being dropped off and abandoned because their parents can't get them the help they need or get the help they need. The most talked about was Nebraska's Safe Haven Law. As of November of 2008, 34 children had been abandoned. All but 3 of the first 30 had previously had mental health care. On November 21, 2008, a bill was signed by Governor Heineman to limit the age of a child who a person can drop off at a hospital and not be prosecuted to the age of 30 days or younger. In 2011, 10 year old Benjamin was left to wander the hospital emergency room. In 2012, an Illinois woman was abandoned in Tennessee. Again, these are only a few of the many.

The schools don't want to help us. There are so many stories about fighting for services, fighting for a diagnosis, fighting for an adequate education that I couldn't possibly link them.

The organizations that are set up to help don't want to help us. The system is overwhelmed. Everyone in the system is stressed. There's not enough money. The excuses go on and on and everyone is saying we're doing everything we can do, there's nothing more that can be done.

When are we going to stop talking about how to raise awareness and actually do something that will help our children and adults?

Thursday, March 13, 2014

Windows Phone

Good morning! Things seem to be back to normal- for real this time. Nothing major has come up, our routines are back, all that good stuff. One really good thing happened- my phone broke. I've had it for years, it's been through a lot. The buttons were cracking, the screen had a lot of damage, it's been dropped in everything from soda and hot chocolate to having a cup of coffee spilled on it. It was a good phone, I loved her until the day she died. I was very upset at first (understatement), and then I got a new phone. My husband was offered a better deal on switching to these smart phones than keeping my regular line so now I have a phone that can do everything! There's a point, I promise. We're getting there.

In the Goofy Child's last meeting, the school psychologist had a bit of advice for me that I never even thought of... a homework log. He said documenting the things we do at home would go a long way in showing that we (as a team) are doing everything we can to help this child but even so, he needs more help. So, I did. I'm not sure what all I am supposed to be writing down, he said to include his OT time in the log so I don't know if I am supposed to write down the work we do in every area, or just school related areas. I went with school related areas, if that's not right, at least I have somewhere to start for next year's evaluations ;) We've kept on with the normal things as much as possible with the chaos that popped up but then I got this new phone and the entire world changed. This new phone has apps.

It all started as a series of events and an accident. Tuesday night, I went to Alex's PTO meeting. I don't really know what happened in the actual meeting, but the after party was awesome and I got some really great information on Alex. Alex really is working on academics and he's good at it. For example, the teacher reads a book and asks questions about it, Alex chooses pictures that answer her questions. For real. Someone sits behind him, but he does the work himself. This is interesting. and very exiting.

Yesterday morning, Alex had an appointment with his pediatrician to check his height and weight. After a night of hanging out, I always wake up feeling like I have a hangover so I'm not completely with it. Yesterday morning, I made a big mistake. I packed as if I were taking one of my other kids to the doctor- which means I packed nothing. No teething rings, no fruit loops, no sippy cup. The closest thing I had to entertainment was a folding brush with a mirror inside. Alex loves mirrors, but that didn't last long. Luckily, my new fancy phone came to my rescue with a notification that WiFi was available.

We watched Ooga. repeatedly. Great things happened here. When the video stops, he always vocal stims because he wants more. I know what he wants but I always ask, "again?" This time, I would say the word once and he would repeat it, "again. again." It was awesome! I didn't have to get his attention first, I didn't have to say it several times, just "again?" "again. again." Toward the end, we would say again and I would hand over hand help him start the video himself. He loved it.

After I took him to school and came home, I got to thinking about my new fancy phone and all the possibilities that just opened. I decided to check out the app store. The only apps I can get are free apps, of course, I'm still trying to figure out how to get $4 for a field trip in April so there's no way I can pay several hundred dollars for a communication app that I'm not even sure he'll use. So, I go looking for free apps under "autism" and "special education" and find several that I know he'll love. I found one communication app, just simply called Visuals by DeviceAvenue, that doesn't look too bad, it's simple and looks like cartoon drawings so maybe he'll catch on easier than line drawings, I found 2 bubble popping apps (Bubble Wrap and Bubble Pop) that don't keep score or have a purpose other than popping bubbles and I found animal apps that you touch the animal and it makes a sound(Farmyard Friends and Animal Sound Box). One of these (communication) may just be a pipe dream, but the others might help him with his goals for using a smart board in the classroom and could lead to using an ipad for communication. The best part, it seems to be working. He insists on it being hand over hand, he'll grab my hand if I don't hold his, but he likes touching the screen to make it do things.

Ok, so, while looking for apps for Alex, I ran across a few others and thought of Goofy. Herbi WriteAbout 2.3 is amazing. The goal is to make Herbi smile. I can't seem to link the video so here you go- and It's great. You use your finger to trace the letters following the red dot. You have to follow the dot to properly form the letter/shape/number or Herbi's not smiling. Goofy loves it! He would get so excited every time Herbi would smile. I enabled plenty of retries and had to point out to him that even though the letter looks sort of right, he didn't follow the dot but he ended up getting 29/31 right. That is very exciting.

The other one I found is called All Sight Words. It has all 315 Dolch sight words in 9 flash card decks. He reads the word and then I can tap the screen to have the word read. I can flag the ones he had trouble with or didn't get right, they get copied into another deck so that we can work more on them. He loves that tapping the screen reads the word. I have only used it with him twice but he hasn't complained once and smiles through it. We have gone from reading 10 sight words per session to reading 40-50 and I can easily keep track of how many he got correct out of the number we read.

This technology, this phone, has the potential to significantly improve the lives of both of my boys.

I read an article recently about why handheld devices should be banned for all kids under the age of 12. All I have to say about that, aside from what I just said above, is Cris Rowan needs to shut the fuck up. "Screen time" does not cause ADHD or autism. Handheld devices did not cause my boys' developmental delays, cognitive impairment, learning disabilities, or behavioral issues but handheld devices could and do help manage and improve them.


Monday, March 3, 2014

Goofy's Review of Existing Data Meeting

Last Monday was the Goofy Child's Review of Existing Data meeting. The meeting to determine if he should be evaluated. Both my brother's surgery and Goofy's meeting were scheduled for Monday morning around the same time. Since I had been with my brother all weekend, I felt that I wasn't really prepared for the meeting but I was also mostly in crisis mode so I wasn't worried about it until the time that all was ready, all was in order, there was nothing left to do but wait. Then the emotion hit. It's too much, too fast, too big. I was scared for both of them and having a hard time keeping it together.

Walking into the Goofy Child's meeting, we were back in crisis mode. Fully armed with fabulous boots and my brother's necklace, ready to get shit done. That got a lot easier when I received the message that they were postponing my brother's surgery for 2pm and freed me to only focus on my Goofy One for this hour. I had prepared for yes and prepared for no- I had my letter requesting evaluation reports and my request for a due process hearing ready to go. I had thought about mediation and looked into it, but figured it would be a waste of time because this was a yes or no answer, no compromise possible. I wasn't expecting what actually happened.  I saw a quote on Twitter yesterday that I feel really applies here, "It's not about what you're capable of, it's about what you're willing to do." -Coach Tomlin.

In this meeting, there wasn't a single question or mention of if we should evaluate. We walked in, sat down, and right off the bat we were discussing which areas would be evaluated. I was confused for a few minutes, listening to them talk. Not really trusting what I was hearing and waiting for the shoe to drop. It never came. I don't know if it was that I complained about predetermination, that I was careful to document my concerns- or made the right points in documenting my concerns, that I was not afraid to go wherever I needed to go or do whatever I needed to do, or if the team sees what I see but he's going to be evaluated.

There's a big feeling of relief that comes with this, but also a big weight of weariness. Two down, two to go. We're not done yet. I'm very tired but I can't let my guard down, I can't get lazy. Next is the eligibility meeting on April 10th. I need to prepare for yes, and I need to prepare for no. "Success is my only motherf*cking option, failure's not."

I requested a copy of all evaluation reports prior to the eligibility meeting. Under IDEA's access rights, I have the right to inspect and review all records relating to the identification, evaluation, educational placement, and the provision of FAPE for my child prior to any meeting regarding an IEP (check your procedural safeguards handout). I tried to give them a copy of Wrightslaw's article on there being a legal mandate to provide parents with a copy of the evaluation reports, but apparently, they are already familiar with it. They glanced at it and handed it back, saying there was no problem with giving me copies to look over before the meeting so I can be prepared.

If I disagree with the team's decision on eligibility, I have the right to request an Independent Educational Evaluation at public expense. The school has the right to file due process to refuse the Independent Educational Evaluation. I need to be prepared to both request and fight for an Independent Evaluation in case their answer is no. How to go about that... I'm not sure yet, but I'll figure it out.

This week, I am working on filling in bubbles on questionnaires to describe my child, and looking into requesting an Independent Evaluation.

Sunday, March 2, 2014

My Brother

I know a lot of you have been worried about my brother since I disappeared for a while. Thank you for your thoughts, your prayers, and your messages. I appreciate that you care. He's doing good. He had surgery on his head last Monday to get the blood off of his brain and was released from the hospital Wednesday. I've been hanging out with the attention whore as much as possible, which is why I haven't been online much. He comes off of his precautionary seizure medicine Wednesday which means he'll finally be able to get us off his ass and he can stop milking this for all that it's worth ;)

I won't lie, there were some scary moments this week, but there were also some very good things that came of it. One thing that seems to have been bothering my brother a lot lately is that it's been many, many years since he's had his mother and all three of his sisters in the same room. That happened several times this week and it didn't turn into a show worthy of being featured on Jerry Springer...much, so woo for that. I have to admit, it was kind of nice. I've missed it, too.

I got a lot of 1:1 time with him this week, that was nice. He's pretty cool, you know. It's been a while since it was just the two of us with no kids, no distractions. Just listening to music and talking. I love him. Today, all four of us and a very good friend spent the day together. I'm hoping to be able to do it more often and considering another great thing that happened this week, that might actually be possible.

As a result of my brother's trip down the stairs, I found that my boys were able and willing to step up and help out. Thing1 even pushed aside his fear of hospitals to go visit his uncle. Thing2 and Walter worked together to cover their brothers when I couldn't be here. Several days this week, Thing2 got Alex and Goofy off of their buses and made sure Walter had things under control before leaving. Today, my husband took Goofy and the girl shopping with him while Walter watched Alex at home so I could be with my brother. A week ago, I would have been having a heart attack at the thought of leaving Alex and going so far away but by today, I didn't even feel the need to call home to check on things. I had no doubts Walter could handle it and that he would call me if he needed me. That is such a relief. It's such a relief to know that when these things happen, when there's a need, things can be taken care of well enough without me.

So, yeah, it's been a very rough week, but also a week that shows our blessings. Today, I am going to relax. Eventually I will do the dishes but I think the majority of the day will be spent just relaxing.