Piles and Piles of Paperwork

Wonderful news in our journey - we got an appointment for autism evaluation. The child psychologist's office called me back and we have a spot for a 3 hour evaluation, on November 5th. There will be a parent interview, child interview, a play session, and then an evaluation with the occupational therapist to look at motor skills and sensory issues. Then the next week (on the 14th) I meet with the team to discuss the findings. That same day I will also meet with the school district team to discuss their findings.

So basically, the 14th is a pivotal day for our family.

I probably won't sleep between the 4th and the 14th.

In preparation for the evaluation they have sent ahead piles of paperwork and questionaires. The GARS-3, the BASC-2, a sensory evaluation sheet, an Autism checklist from another source, a checklist from our hospital system, and the normal intake papers. On top of that, I will by typing up documents to accompany several of the sections, since my comments and concerns won't fit in the little space provided. I am all about providing everything that might be needed and covering my bases before I am even asked. I also get flustered when something emotional is going on, and I don't want to forget anything.

Rocket Boy's behavior has been in a pretty downward spiral as of late. Yesterday, he tried to choke me...yeah. My three year old put his hands around my neck and squeezed and yelled. I have no idea where he got that from. We are very careful about what he sees on TV and he has never seen that kind of violence at home. Ever. That meltdown and aggression started when I asked him to stop running his car into my leg and he threw it at me. I took the car and the meltdown commenced. He finally passed out for a nap. I had to lay down and calm down...and just cry. Hearing my little boy yell "I don't like you!" and throw things and hit me and get so physical - no mother wants to experience that.

I hope that this evaluation leads to answers and help. Rocket Boy and I need tools to help him.

Calm Down Corner

Since our visual schedule is working rather well, I decided to try a version of the visual calm-down aids I have seen online. 

We have been using "time-out" and "time-in" for a long while now. While "time-in" still works at times (when we catch a behavior spiral before it gets out of control), time-outs were not working at all anymore. It didn't matter the location or the method or the time length. It had simply lost meaning, and honestly it was driving me crazy enforcing something that wasn't working. 

So we took the advice of many a book and started fresh. Introducing "Calm Down Corner"

 

This is a corner just off the living room, but behind the baby gate (so that Rocket Baby can't interrupt). I can see and hear him he is not in isolation. In our oddly set up downstairs living area, it's really the only spot I could clear out. 

I marked out a box on the floor with tape so that Rocket Boy knows precisely where he is expected to stay (which was a problem with the previous time-out method). I added a small pillow, a SMALL blanket (anything larger than a baby blanket becomes a whirlwind weapon of doom), and a few items - one puzzle, one favorite book, and two of his calm-down glitter bottles we made together. I also added a visual aid to the wall.

The visual aid may have to change, which is the one road block we have hit. I meant for the list to be a visual reminder of things he could do, and explained he didn't have to do all of them but that he could do what he thought would make him feel calm. 

Instead...he insists on doing everything in specific order and wants me to verify each step. Needless to say that doesn't give him or I a break from the situation and raised emotions. So...I will figure out something else there. Maybe a choice board? But then that is too much when he is upset or wound up. If anyone has suggestions on that note, let me know. 

Overall though, I think the new space is working. For one, I don't always have to send him there. Several times in the past couple of days he has asked to go to Calm Down Corner when he feels out of control. That is a huge step for him, especially given he is three years old to begin with without all the other things he is dealing with. And when I do send him there to calm down, he is actually staying there and not making a game of it. 

While we need to refine the method a bit, I hope this is a positive change for us. While we still try to use "time-in" (comfort, hugs, deep breathes, etc) as much as we can, Rocket Boy tends to fight physical comfort from others when he is in the middle of a tantrum or meltdown. Hopefully this will give us a place to go when he doesn't know how to accept outside help. 

Signs of Impending DOOM

Or, you know, the start of a crazy week.

Sign One - Five million requests within five seconds of waking up. (P.S - I'm not a morning person to begin with)

Sign Two - Five million more requests in the ten minutes it took to get changed, walk downstairs, and hand out breakfast to all of us.

After this, all further signs blur together in a big mess of overactive excitement, stimming type behaviors, tantrums, and odd conversations.

Sigh, I love this kiddo. He is at the start of a bad run though, so we have to just buckle down and work through it.

Finally

After our evaluation with the school district I emailed the evaluation team to ask for advice and referrals in our local area. I got an email back a day or so ago with a nice list of evaluation centers who do full ADOS-2 testing, child psychologists and a few other resources. 

We decided to start with a child psychologist here in town who has a good reputation in the autism community here, as well as with the school district (specifically, that she sends very thorough reports and suggestions). I spoke with the booking clerk today and she spent a good 15 minutes on the phone with me listening to the concerns that lead me to make the call and writing down different oddities of behavior or developement we noted so far. While we didn't get the appointment set (the secretary for the specific Dr. we will see is out of the office until Tuesday) I did get a very good vibe from the initial phone call. She even let me know about local support groups for parents that I had been unable to unearth on my own. Fingers crossed we can get in soon! 

Life has been a bit hectic and stressful as of late, hence the temporary slow down in blog posts. Rocket Dad is pulling more hours at work (65-80 a week now), plus school and study time, so I am sorta floating on my own out here with parenting Rocket Boy day-to-day. It doesn't help that some of the support I thought I could count on has been less than helpful and I'm not sure where to turn for moral support of my own. When I feel the need to defend my parenting or our decision to seek diagnosis every step of the way through a conversations it sorta puts a damper on things. If we do get a positive diagnosis of ASD or similar...will those feelings ever stop? Something tells me not to expect it.

I am attempting to stay busy with the kids and find a lot of ways to occupy our days, which is difficult when a lot of the things Rocket Boy likes to do gets a bit destroyed by Rocket Baby. Maybe once Baby stops eating crayons and wants to join in the purpose of coloring time things will be a bit easier. Until then, well, lets just say we have had some colorful diapers. 

I couldn't resist. ;)

Book Review: The Asperkid's Launch Pad

I am an avid reader and a lover of the library; I could honestly spend all day in the quiet of a library, turning pages of books new and old. When we decided to seek help for some of the specific issues Rocket Boy was having I turned to the library and picked up books across a wide range of subjects.

One of the most helpful books I found was one I picked up on a whim - The Asperkid's Launch Pad, Home Design to Empower Everyday Superheros, by Jennifer Cook O'Toole.

While this book is focused on how to make a home more functional for a child with Autism/ASD, I feel that the tips and tricks would be helpful for anyone, young or old, Autistic or Neurotypical. This book breaks down how to help your child in each part of your home and contains extra little notes and tips along the way.

The photos in the book are beautiful without being overly-staged, making me feel that the goals are attainable and translatable. While some of it is beyond my comfort zone (accessible glass wear for toddlers/young kids to use) it does give me a lot to think about once we don't have a Rocket Baby getting into everything.

One of the most profound points of this book is the way it opens your eyes to how an "asperkid" sees the world. It points out how complicated tasks can be that we may take for granted, such as pouring a drink. After I read this book I started to verbally break down tasks for Rocket Boy and found that he did so much better with that extra direction. The visual schedule suggestions have worked very well too.

If you are looking for ways to help your child now, I really can not recommend this book enough. In all the turmoil of facing a possible diagnosis for your child this book can cut through the suggestions and scientific talk and get right down to practical advice and application. 

Visual Schedule Time!

Rocket Boy is definitely a visual learner, so a visual schedule seemed like a no-brainer. I have searched high and low for a schedule and cards that would work for us but could not turn up anything. I found a card builder as well, but for some reason it didn't want to load any of my clip art. So, I made my own.

I created a table in Word - 3x5 with 0.5in top and bottom borders. This gave us pretty good size squares to work in. Then I found clip art for each activity through Word or a quick Google search. I have started with 30 different activities but I am sure I will need more at some point. 

I printed them and cut them all out. Then I cut pieces of poster board for the back of each to make them a bit more sturdy. I had a crinkled bit of poster board in the craft closet I couldn't use for much else, so it finally went to good use. 

Then I got down to "laminating" - aka, covering everything in packing tape. I am sure this would go a LOT faster with actual laminating material, but for now my tape method works just fine. Then I cut a bit of magnet tape for the back of each since I got a magnetic board to post them on. You could also do velcro and a different type of board for the back. 

After a long while, I got all of them "laminated" and applied all the magnets. I think they turned out pretty sturdy and they stuck to the board really well. 

I added a ribbon to the back of the board since I want him to be able to move the board from upstairs to downstairs to see throughout the day. I also added some lines in permenet marker to denote some "reading lines" - he is in the pre-reading stage and I want to help him get comfortable reading left to right. 

I already see a couple more things we need, mainly some multiples of a few activities (like two "brush teeth" and another "watch TV" since we have a couple of viewing times each day). I will most likely wait to make more until I have at least half a page worth to print. 

In case anyone wants a starting list, these are the activities we used: Get Dressed, Breakfast, Lunch, Dinner, Errands, School, Set Table, Clean Up, Watch TV, Bath, Stickers, Brush Teeth, Bed Time, Play Dough, Coloring, Story, Mommy Time, Daddy Time, Grocery, Target, Church, Doctor, Quiet Time, Visit Friends, Park, Dance Party, Puzzles, Library, Movie Night, and Special Activity.

Special Activity will be used for one-time events - like going to a festival or the pumpkin patch. I just put some festive pennants on that one. We actually have a square just for shopping  at Target - it is his favorite place. Every family will have slightly different activities, so customize this to your needs. 

I also made sure to choose pictures that would really resonate with Rocket Boy and not cause issues. For instance, most of the boys shown look like him (blond hair, small boy) and in the "errands" spot the car picture actually looks like our vehicle. I know my son and I know that if the pictures were not close to reality he would fixate on that. A good way to avoid all that is to take photos but I honestly like clip art better. 

I will be adding a folder pocket to the bottom to hold "done" items and the activities he can choose from each day. The extra magnets will be kept in the bottom of our calender, which already has a great little pocket. 

Hopefully this will really help with transitions and changes in schedule which are especially hard for Rocket Boy. Do you have a visual schedule for your kids? How did you make yours? Let me know in the comments!

School District Evaluation

The start of our journey with Rocket Boy was a high ASQ:SE score. He scored a 170 (not including the extra points from areas I marked as concerning) and the cutoff for "normal" is 70. This confirmed for me that the issues we were having was not all in my head. The public health nurse who helped us with the screening suggested contacting our school district as a good place to start since Rocket Boy was past the age for the Early Intervention programs.

And so, we contacted our school district. Initially we were told it could be two months before we would be seen, even with the high ASQ:SE score on file. I decided to send the evaluation team a document outlining some the behaviors we were seeing at home and socially, hoping that it would speed up the process. It did, and they fit us in just a week after that email went out.

Today was the evaluation. Rocket Boy did super, as I knew he would. He is very smart, but of course I think that since I am his mama. When it comes to cognative skills and learning ability, RB is ahead of the curve. Today just confirmed that again for me. We won't know the actual scores for a few more weeks but their initial tally today showed that he is advanced. Since I tested within "gifted" range as a child, this wasn't a huge surprise to me - but it doesn't stop me from feeling proud!

However, given my concerns and his ASQ:SE score, they want to observe him at preschool. They will not be looking so much for educational delays or issues but more for social abilities. They want to see him among his peers and trying to "attend" (pay attention) to tasks. They agree that while he may be able to sit still for three hours right now, his immediate meltdowns after school time is over shows just how much effort that takes for him.

They were able to give me the names of some Occupational Therapists and Child Psychologists in town who we can contact for private evaluation. His social/emotional issues will not receive help from the school if they don't interfere with learning, therefore we will most likely need private evaluation to get any therapies or help.

Step One of this journey is completed, or at least mostly completed. I will sleep a little better tonight just knowing we put one foot in front of the other today.