New Year, New Sensory Equipment (Pt. 3)

We have a lot of new fun things here in the house for Rocket Boy! Most are from Christmas, but some are just being added (or gifted) to grow our repertoire and create an environment that Rocket Boy thrives in.

The first major piece to be added was a crash pad. Now, there are high priced (and large) crash pads out there, some are like gym equipment, some are made for therapy. But bottom line is that our space and our budget don't allow for those options. So I had to wrack my brain a bit for an alternative. 

What we ended up with was a sleeping bag (found at the thrift store for $3 - and I couldn't resist the retro MLP print) and an assortment of blankets and pillows to stuff it with. Most of the stuffing is just extra things from the linin closet that don't get pulled out much. 

Now, it's not perfect, but it does the job for now. Ideally, I will get some upholstery foam scraps to stuff it with and sew it closed and make a dedicated cover for it. But for now we "fluff" the stuff inside every couple days and cover with a spare blanket to give it a washable cover. 

Rocket Boy loves this thing. I could not begin to guess how often this is jumped on. He jumps from the couch to the pad, from the floor to the pad, from the pad to the couch...jump jump jump. But I'm not complaining - it saves my couch from some abuse. He has a dedicated spot to jump into instead of jumping on the couch, all over, all day (which is what he did previously). 

I never thought I would be encouraging him to jump on things, but you change your idea of "good parenting ideas" when you have a sensory kid! 

While it will be nice to upgrade to upholstery foam in the future, this was a quick and almost free solution I'm pretty proud of. What sort of diy contraptions have you made for your kiddos? 

New Year, New Sensory Equipment (Pt. 1)

I mentioned before Christmas that we were waiting on a Sensory Pod/Sock. It came in, and I have to say I am impressed with it! 

The quality of this sensory pod seems very sturdy and nicely made. The seams are holding up perfectly, and Rocket Boy plays hard in this thing. The color was also just as bright and vivid as showed online, which is always a nice surprise. 

The pod is easy to use - it's sewn envelope style and you just slip in the long end, and if you want you can slip the short side over your head. This gives the full experience of wrapping in blankets or being enclosed. 

For Rocket Boy, this is used as a replacement for his ritual of "blanket tornados" - basically destroying a bed in about a nanosecond, wrapping in the blankets, and going nuts. He has even ripped holes in sheets doing this! 

So this for him is an active therapy item. He jumps and rolls and stretches the material as far as he can (hello joint compression!). He can see through the Lycra type material pretty well, even though it is pretty thick. 

For other kiddos (and maybe for Rocket one day too) this could be a very calming item. It envelopes you, and while it doesn't shut out light or noise, it does give a quick safe space. It folds small, so it would be good for traveling, a portable safe space if you will. 

We only use this a few times a day, for five or ten minutes at a time since it is so stimulating for Rocket Boy. As he gets more able to regulate he will be able to use it more on an on-request basis.

The Holiday Rush

I'm sneaking in one more post before Christmas - the holiday season throws me off my normal routine, including blogging.

One of the biggest changes around our house lately has been the instillation of some new sensory items - and they are REALLY helping.

I made a crash pad, though it needs some tweaking. But I found an old sleeping bag, stuffed it with all the spare pillows and blankets, and it sits at the end of the couch. This way Rocket Boy can jump off the couch onto it. It has seriously saved my couches from further abuse. He jumps off one spot instead of jumping up and down all day on the poor couches.

The other addition has been a trampoline. We came by the trampoline through family - for free! My sister-in-law got it as a gift for one of her children but they have a large outdoor trampoline so they never even opened it. I mentioned our SPD diagnosis and things were looking for in conversation, and she offered the trampoline to us.

These two items are only the start of our sensory collection but we have already noticed a huge difference in behavior. His aggression towards Rocket Baby has almost totally disappeared which is a huge stress reliever for the whole family (probably especially for R.Baby!).

 We have started to do "roll-ups" before bed and now he asks for them. Basically we just roll him in a medium sized fleece blanket (with his head out) and then I rock with him - big rocking motions. He starts out rigid but then he starts to relax and is all ready for bed.

Next on our list is a Sensory "sock", which is on its way to us, is going to be a hit I think. Rocket Boy has a major obsession with wrapping up in blankets and this sock will hopefully give him his own little cocoon without messing up my bed. We are also going to look into getting a weighted blanket and a fidget seat.

The holidays are causing some over-stimulation and craziness in our house, like it does for most people. But all in all, I think he is handling things well. Thanksgiving was with a different group and in a new place this year, which made him get a bit anxious and we had to leave early due to the behavior that brought to the surface. We are hosting Christmas dinner this year, which will either be easier (his own space) or way too overwhelming...we shall see.

I will ask you to insert some awesome pictures in your mind of Rocket Boy jumping like crazy on a trampoline and of our Christmas tree...because I don't have time to edit them right now. Happy holidays everyone!

Official Diagnosis, Round 1

After meeting with the psychologist, occupational therapist, and the school district team we have an official diagnosis - Sensory Processing Disorder.

While I don't think this will be our last stop on the road to answers, it does give us a great starting place. They identified that he is a sensory seeker, especially in the vestibular and proprioceptive areas. (Try saying proprioceptive three times fast...)

He has avoidance behaviors in a few areas, mainly with auditory issues. For Rocket Boy, mechanical noises are especially hard - vacuums, the garbage disposal, hairdryer, our clanky car, etc. He also has some tactile avoidance, mainly with sticky/gummy textures or foods.

The school mentioned that he has evidence of some very advanced problem solving skills and is advanced in some other areas as well. They noticed some of his scripting and rote conversations and stimming, which at the very least was affirming to me that I am not imagining things. They noticed attention issues as well, but they were able to bring him back to task pretty easily.

The psychologist says that the testing shows "autism-like behaviors" driven by sensory issues and possible ADHD. While they don't diagnose ADHD in children this young, she sees sure signs of it especially given the strong family history. I'm not sure that she ran the full assessment that should have been done (actually, I am sure she didn't as she said so herself) but for now we are at a point where we can get OT help and see what improvements we see.

We are working on making some simple changes at home to help with his seeking behavior. I made a DIY "crash pad" for him with a sleeping bag and extra pillows and blankets. I plan to make a post soon showing this little project. While it needs a little tweaking, it works as a quick fix for a kiddo who CAN.NOT.STOP.JUMPING. He really seems to love it and our couch is getting a little break.

We changed around our Christmas lists to include a lot of sensory items, and I'm hoping to pick up a mini trampoline on Black Friday. Trying to explain to family that we need things like fidgets and weighted blankets instead of another electronic toy is a bit difficult, but hopefully they will follow the list anyway.

Speaking of Christmas - here is a little peak at taking card photos with my two Rockets:

Processing...

Our evaluation with the child psychologist and occupational therapist was last Wednesday.

I thought I would update right away, but honestly it was a lot to process.

And we don't know the results until this Friday.

Honestly, I am still not sure what to think of the experience or what I was told. Currently, autism of any level is "off the table" according to what the psychologist told us at the evaluation. Apparently, he is too talkative. Having met autistic children and adults and parents of autistic kids, I know very well that autistic individuals can be talkative and social. I found it really odd - and frankly wrong - to take autism out of the equation simply based on the fact that he interrupted me hundred times during the evaluation.

And then I get this feeling of guilt that I am "upset" or "confused" about autism not being a possibility - obviously as a mother I would love for a doctor to see and say he is totally normal. Except that is not what she said - she said that we are obviously looking at "something", most likely severe ADHD and SPD (sensory processing disorder). She said that many of the symptoms/behaviors can mimic autism, especially Aspergers/high functioning. Even with her admitting that his behaviors (especially in repetitive behaviors/stimming) appear autistic, she refused to use the autism diagnostic checklist during their playtime.

If she decides this is what he is dealing with (ADHD/SPD mix), the only options we have are occupational therapy (OT) and later on, medication. When I expressed my worry that while he does okay in school now (3 hours, twice a week), that he could be overwhelmed later on when it is 8 hours a day, five days a week her answer was "well, that is when you use medication".

We are already doing the other things suggested, like diet changes (he doesn't have sweets, sugar, junk, and after taking out food colorings we saw no difference though we do avoid them in general anyway). We already are using the parenting techniques she mentioned. I feel as though she heard our cry for help and answered with a generic label.

We will see what Friday holds. What her final conclusion is. If nothing else, we have gotten in touch with an OT that we like through this (who was much more helpful!) and at least she is taking his sensory issues seriously. We also get the "results" of the school testing on Friday, I thought they were helpful as well when I met with them during that evaluation.

In case you can't tell, I am still processing, I am feeling muddled. And I am feeling rather foolish that I hoped the first doctor we met with would listen to me and take his entire history into account, not just the good day he was having that day. I came in to her specifically with questions about "Level 1" Autism - because when I read those criterea, when I look at the books and the examples and the checklists, I see my boy in the pages. I can absolutely accept that it can be something else, but I at least want my concerns taken seriously.

Everyday since the evaluation has been very hard for Rocket Boy - he is in a sensitive period right now, and everything and anything is setting him in tantrums, fear, or crying. I can see the confusion in his eyes when he can't handle the world, and it makes me even more determined to make someone listen. I'm his mom, I know him better than anyone, and I know that I have to work for him to find out what our answer is - no matter what that ends up being.

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.

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.

Calm Down Tools

On a recent trip to Minnesota we found a great calming aid for Rocket Boy - a water/oil sculpture. You know, the kind that drip slowly and most people use as paper weights? This little thing came in especially handy during a level 10 meltdown later that night.

After seeing how much he loved them I had to hunt for more. Amazon turned up a few neat ones so we now have a little collection. Hopefully I can find some large ones eventually. I plan to make a calming glitter jar as well. 

What tools work as calming aids for your kids when a meltdown is on the horizon?

Woo Woo Woo (Or, Our Time at the Grocery)

Woo Woo Woo

"Okay honey, that's a cool noise. Can you think of another cool noise to make?"

Woo Woo Woo

Woo Woo Woo

"Hey bud, did you hear mommy?"

Woo Woo Woo

"Why don't we sing a song? The Wheels on the Bus go round and round..."

Woo Woo Woo

(Continue this thread for about 35 minutes through the store...without stopping.)
 

I know he was overstimulated. I know he was just trying to cope. I eventually gave up trying to redirect and just got the shopping done, amid a sea of "stink-eye" from my fellow shoppers.

Once upon a time when I didn't have children of my own I probably would have been one of the stink-eye givers in this situation. I didn't understand that kids were not robots, and they don't have a mute button. I didn't understand that children (and people in general) can have sensory overload. I wish I could go back and smack myself. Really.

A Start In the Right Direction

Thursday morning we had an appointment with our family doctor for Rocket Boy. He needed a well-visit, having missed several due to moving cross country and insurance issues. Rocket Boy has gained two pounds since the start of summer - which is amazing to me as his eating is getting pickier by the day. All of his normal developmental stuff checks off, apart from being wobbly in balancing (though if he had stopped trying to hop on his one foot that would have made it easier).

When we started to get into behaviors and social/emotional aspects, that is where my concerns came up. You see, RB has been giving me pause since babyhood - little things like not making consistent eye contact, not responding to his name, and not being "cuddly". He has usually preferred to play on his own and wasn't super social as a baby.

Then he had language development on an odd curve and a habit of using made-up words (without seeming to realize they were made up). For instance, just after a year old he stopped saying "mama" and then began to use the word "Gig-ga" to call for me. It took us ages to figure out this phrase was his word for "mama"...and even though it was constantly corrected and we (the adults) never used it, he continued to call me that until after his third birthday. Then one day, it was just "mom". (Needless to say I was relived to have a normal name again). He continues to make up words and use them in conversation with no apparent knowledge that the word isn't meaningful to the rest of us. 

Lately he has added what I can only call "stimming" actions to his repertoire of behaviors - running a consistant route through the living space on tip-toes for mild excitement/anxiety to a "knee spin" when he is really wound up tight. If I try to stop these activities he goes totally wild - throwing his body around and kicking and crying. His preferred method of "play" is aggresively physical and he can't seem to help himself - head butting like a bull and rolling on people. He is overly touchy to his peer's faces instead of using a standard "hello" to start a conversation or play interaction.

I could go on (and I did in a three page write up for his doctor), but suffice to say that his collection of behaviors has gotten to the point of being very troubling. Our doctor agreed that an evaluation is needed and the "big A's" were mentioned - Autism Spectrum Disorder and ADHD. I can't say I was surprised at her suspicions, but it puts a new light on things to hear it from someone else.

We have an evaluation through the school district in a little over a week, though from what I understand they are more concerned with learning behaviors vs. the whole picture - and so far in preschool he is doing well (only 5 class days in, so we are hoping it continues). This focus on learning difficulties has me looking for an independent evaluation as well - something I need to speak with my insurance about (yay, insurance calls). I have a feeling that whatever is going on with our little Rocket, it is not going to hamper schooling for some time - but home and social life are turning into a situation that this Rocket Mama needs help with.

But for now, Rocket Boy is sleeping soundly upstairs and we have a fun weekend planned. If the mosquitos will finally die down we will venture to the park tomorrow to let off some energy. Fall crafts are waiting on the table and church this Sunday is at a historic church set in the middle of an adorable park. My project for the weekend is to look for solutions for a visual schedule for Rocket Boy - routines help him so much, but I need a schedule I can change quickly when needed vs. the hand drawn lists I have done in the past.

Have a beautiful Fall weekend everyone!

Rocket Boy!

Out Into the Interwebs - An Introduction

Hello Blogosphere, Interwebs, and Others -

I won't spend too long on a huge introduction, hopefully we can get to know each other through many more posts. For now I will say that I am a mother - a mother to two boys, but one of whom will be the "subject" here. We shall call him "Rocket Boy" or RB for short.

Rocket Boy started out life in the normal fashion...wonderful birth, wonderful breastfeeding relationship, pretty wonderful babyhood. He is now three and a bit. Rocket Boy is truly an amazing little guy but lately we have been getting more and more worried about RB. And mama has been getting more and more worn out and frazzled.

The title of this blog and Rocket Boy's name come from the feeling I have about my little guy. Sometimes I get the feeling that Rocket Boy is "on another planet" - I can't reach him, and he can't reach me. Other days he is very present and we are on the same planet. As I write and work through all this (more to come on what "all this" is), that feeling is what I come back too. I come back to it each and every day and it keeps me up most nights.

Starting tomorrow we are going to work towards finding solutions - solutions to get me to his planet or bring him closer to mine. Maybe somehow we can meet in the middle.