pyroluria?

Just received this interesting information from a fellow mom friend, Betsy.

Up to 50% of autism kids test positive for pyroluria, her pediatrician had never even heard of it. Basically it sounds like it causes too much Kryptopyrrole in the blood which leads to a dramatic decrease in zinc and B-6. Some of the symptoms that I read were: poor tolerance of physical and emotional stress, mood swings, depression, sensitivity to light, noise and other tactile sensitivities.

If interested you can ask your pediatrician to run a Kryptopyrrole test done via urine. Betsy's son's levels were indeed elevated.

I will keep everyone posted if I hear anything more on this and I plan on having boy's levels tested as well.

Some interesting reads:
http://kryptopyrrole.com/
http://www.nutritional-healing.com.au/content/articles-content.php?heading=Pyroluria

Thank you again Betsy for sharing this information!!!

"The key is not to prioritize what's on your schedule, but to schedule your priorities."~ Stephen Covey

Ok so I have been ALL about the schedules and routines and lists and charts and to do lists and been done lists...it is quite overwhelming! But I have narrowed things down a bit and think that the following will be super helpful for us this year, thought I would share with all of you.

Good Morning, Welcome To Your Day chart: this chart represents the things that need to be done in the morning before we walk out the door for school (since school is 6 days away we will work in school mode).

• I have added to the good morning chart a task for him to choose what sensory fun we will do that night
• I have put a variety of sensory fun tasks onto white 3 x5 notecards and based on what we have going on that night, he can randomly choose 1 or 2 cards (blindly choosing eliminates him needing to make a choice (which is a meltdown begging to happen), but still gives him some ownership)

Some of my sensory fun items for tactile - and added bonus, play classical music during!

1. Pick up cotton balls with tongs
2. Pick up cotton balls with tweezers
3. Sift rice into cups with one hand
4. Play war fast and deal cards
5. Play uno, deal cards quickly
6. Shaving cream in the shower on the tile
7. Shaving cream in ziplock bags with food coloring. Allow them to write and draw on the ziplock (make sure you double bag)
8. Shaving cream car wash - drive cars through it
9. "Draw" pictures with cooked spaghetti noodles
   

Good night chart - the good night chart is a routine of things that need to be done before bedtime. I revised the good night chart to include, as the very first item, "Do sensory fun".

I think adding the sensory items to the charts will ensure that the sensory is not overlooked.

Also, since things are so insanely busy with school starting, I need to create weekday routines for quick reference. For example it would be something like the below...

We also need to go down to a daily @ school schedule that he can keep in his desk at school so that at any given moment of the day he can find out where he is at and where he has to go.

Hopefully these will be helpful and make him more productive if he feels like he is in some kind of control.

Hopeful, ever so hopeful.

routine chart ideas

As requested, here are the routine charts that I created for my son. They are fairly simple.

Right now we have a Good Morning and Good Night chart. I laminated them and he marks off his tasks with a dry erase marker, which adds a level of fun to it.

When school starts I will be adding a Homework Chart. I also create little charts for him for what his school day entails so throughout the day he can review the chart and find out where in the world
he is at.

I also need to create a detailed shower chart that I can laminate and put in the shower with him. Maybe he can use soap to mark items off. It is amazing how hard it is for him to remember what he needs to do in the shower.

routines, routines, oh how we love our routines

We are strictly enforcing the routine charts now :)

School starts in two weeks, gotta be ready for the super chaos to begin.

So far the routines have been happily accepted, welcomed with open arms. I laminated them and he uses a dry erase marker so that alone makes it seem fancy.

Right now we have a good morning and good night chart. I am also creating a homework and shower chart.

Fun times!

it's been a busy while!

Wow, I cannot believe that it has been so long since I have blogged! Of course, I have a ton of information to share, so let me share away..

Updates with sensory therapy:

We have homework that we work on now. The homework we do with boy helps with his manual dexterity, at this point. Here is what we do:

• Deal cards quickly
• Play War FAST (this is a super favorite now)
• Pick up cotton balls with tongs of varying sizes or tweezers (you can use tongs, tea strainers, etc). He can switch hands if his right hand gets tired.
  
• Thread foam shapes on string
• Play with shaving cream on a placemat (make figure eights with right hand, then with left hand, then with both hands -- both hands works on bilateral coordination)
• Shaving cream on the shower walls while he showers (this one is my own creation)
• Picking up coins or buttons one at a time
• Placing handfuls of coins or buttons into a container one at a time
• Shuffling cards
• Sorting cards
• Turning cards over as fast as you can
• Tying and untying small knots in rope (haven't tried this one yet)
• Clipping clothespins onto edge of folder (haven't tried this one yet)
• Flicking cotton balls at target (this one is really fun)
• Assembling nuts and bolts (haven't tried this one yet)
• Place a row of paper cups on table and overturn as fast as you can

Updates to Monday therapy sessions:
We are now charting anxiety levels for the next two weeks with boy assigning a number to his anxiety. I hope this will help with his anxiety issues and give him ways to manage his anxiety. His newest thing is counting down to October 3rd, which is the date that he remembers he got a flu shot last year and so is convinced that the flu shot will occur on October 3rd again...

I love his memory, but it can also be a burden!

miracle book

I'm still reading Aspergers: What does it mean to me? and I haven't even begun to work with boy with the workbook...there's just so much info to absorb and honestly I'm not yet ready to tell him that he has this condition? disability? What do we even call it? I'm sure I will end up with just "thing"..."So, you have this thing..." hmm...

How would I tell him he had an ear infection? "You have an ear infection, you need to take antibiotics."

So how about, "You have Aspergers, but don't worry, there's no medicine you need to take for it." I'm sure he will just be like "ok cool, what is it? Alright then."

Anyway, the book touches on so many important topics, providing information for him to read about each AND providing strategies to help him deal with the various issues associated with Aspergers. I am very excited to start working with him with this book!!

aspergers: what does it mean to me?

I cannot even begin to blog about the last two days of my life. Basically, we had another milk infestation during vacation and I can't believe I didn't learn from my mistake the last time we had the milk infestation. All I can say is...we were on vacation and I felt badly that he couldn't have icecream so I thought...oh, it's just a little icecream...it can't hurt TOO bad.

I was wrong. Very very very wrong. It is really quite difficult to track down the ingredients of all foods that he eats. It seems much easier to say "hey is this peanut free?" (and have the waiter know what the heck I am talking about) than to say "Hey is this milk free? No, I don't mean lactose free, I mean completely milk free? Well, it matters because milk is evil in our family!" -- That conversation didn't happen quite like that, but based on the looks I received it could have gone exactly like that.

So anyway, we are day two with strict no milk again and I think the crack, I mean milk, is almost out of his system. If things are not turned around by tomorrow, I think I will check him into a detox clinic...I wonder what kind of crazy look they'll give me.

On a much more exciting note! I finally FINALLY made it to the book store to get "Aspergers: What does it mean to me?" by Catherine Faherty. It was recommended to me by our therapist as a great book to use with boy to help explain to him what is going on and why he feels the way he does. My initial feeling on the book is really good. I'm super excited about it.

The book is in a workbook format that he and I will go through together (once he has the milk crack out of his system of course). The first section explains autism and the spectrum -- questions like "Was I born with autism?", "Why do I have autism?". It also stresses that there is nothing wrong with having autism, it does not mean that you are sick, it does not mean that you are bad, it does not mean something is wrong with you...all it means is that you have a different way of thinking. Immediately after that it goes into strengths, such as being very detailed and able to easily memorize various things and asks them to list their strengths in these areas.

Next, it goes into routines, changes, schedules and how to be more flexible. For example (and this one holds true for us) the book goes through why it is important to allow others to be first at somethings even if you always like to be first no matter what. Then there are a few lines that they can write on to mark when they allowed someone else to go first instead of themself.

There is also a sensory section that lists the various sensory issues that they can circle if they are bothered by them with fill in spots where they can provide more info...this will be super helpful for us because I'm still not 100% on what areas we are sensitive to and non-sensitive to.

Overall this book looks amazing and I cannot wait to dig further into it! I will blog what I find is good, bad, and boring! Please let me know if there is anyone out there who has also used this book.

routine charts

This morning was our first use of the "Good Morning Chart" and let me tell you, it worked miracles. This was only our first day of use so maybe it was just the novelty of the whole thing, but I'm feeling more optimistic than that!

what I've learned

I had a one on one appointment with the therapist on Friday. Here are my notes of what I learned. I think that these will be very helpful. The therapist said that the behaviors will get worse before they get better and the hardest part with all of this is the follow through. I'm making up my morning, homework and bedtime routines now! I have an appointment next Friday to go over how to handle the summer routines - basically you still have morning, homework, and bedtime routines, but the homework routine may be just reading for a half hour at X time).

*She also stated that this could take 21 days (of us following through perfectly) before it makes sense to the kids!

The number 1 important thing that she stressed is that during discipline you have to act like a complete robot. Do not show any emotion over the situation. After you have reacted to the behavior (timeout, soothing box) then you can show emotion over what they did.

5 things that parents must commit to: (if you cannot commit to these 5 things, you will never succeed).

1. Structure - you should have 3 things that always stay the same (morning routine, homework routine, bedtime routine) and at bedtime you should take 5 minutes to let your child know what the schedule is for the next day.
2. Consistency - what we expect as parents must stay the same. Family rules should be posted in the house.
3. Follow Through - because the rules are posted in the house and have been discussed as a family, there should be no warnings given if a rule is broken. If a rule is broken, straight to timeout. Timeout should be in an open, neutral space (not a bedroom - bedrooms need to be reserved for quiet, peaceful places that we sleep, not where we take timeouts). If the child is disruptive during timeout, they gain additional minutes (timeout minutes = 1 minute for each year of age)
4. Teamwork - stay in communication with everyone who watches your child. Let them know what works, what doesn't work, etc
5. Communicate - whenever someone enters the house (i.e. Dad comes home from work) that person should be given 5 minutes alone to change clothes, etc. When a parent comes home, they should use that 5 minutes to communicate with the other parent about what happened during the day.
   

ROUTINES
Laminate routines so your child can check them off with a dry erase marker.
For the homework routine, estimate an amount of time that homework should last, don't allow it to go longer (this is so the child knows that the homework timeframe will end and they wont dillydally).

Rewards
You can use video games as rewards. If your child completes everything on their morning routine, for example, they earn 15 minutes video game time starting at X time.


MELTDOWNS

When to remove from the situation?

• If you are out doing something for him (i.e. at T-R-U and he can't decide what he wants so he starts to melt down) you leave.
• If you are out doing something for you (i.e. grocery shopping) you do not leave.
  

How to deal with meltdowns?

• His bedroom should be his safe, quiet, peaceful sleep place.
• He should have a "soothing box" in his room filled with things that are calming to him - music CD, a favorite toy, a blanket, a journal, a blow up punching bag.
• When a meltdown starts, send him to his room to calm down and tell him to use his soothing box.
• If you find him in his room hitting himself, tell him that it is unacceptable and he needs to find something out of his soothing box to calm himself.
• Offer him the option of using his journal to write down his thoughts about why he is angry, frustrated, etc. For us, he will yell that he hates his brain so the therapist suggested that he write a letter to his brain in his journal.
  

new appointment update

Live from therapy, already an update!

Our next session will be with just me. For the next week or so I need to journal exact examples of his behavioral problems and bring them in to her so she can give me exact ways to react.

woo hoo, sounds great to me!!

Several weeks in and finally Im going to learn some tricks.

next appointment

Here I am blogging live from our next therapy appointment. I am waiting for the therapist to come get him and then they go back on their own.

I have a few key issues that need to be addressed...
1. he has become very 'mouthy' lately...more so then usual.
2. what discipline methods should I use with him?
3. how do I distinguish between what he can control and cannot?
4. he says he has no friends in school and no one plays with him (i think the biggest reason is because he refuses to play what other kids want to play).
5. ongoing frustration/anger issues.

I hope to start learning some coping skills for him! It's a slow journey as he learns more about his emotions, which is the key to all other progress.
I'll keep everyone informed!

self regulation

I was emailed a copy this Self Regulation Information document today about self regulation. I think some of these techniques will work amazingly for my son so I wanted to share them. I especially like this chart of what to do if over-stimulated or under-stimulated.

I will review and comment on what works and does not seem to work.

Let me know if anyone has any feedback!

terminology to know

When my son was first diagnosed there was so much lingo that flew around between doctors, teachers, counselors that I was completely lost. I was constantly googling everything that I heard to try to learn as much as I could about what "everyone" was talking about. In addition to resources seemingly being available only to a special inside group (I know that is truly not the case, but from my end it seems like there is this elite group of individuals who have all of the answers and are secretly holding them in a vault with limited access) there is also an entire language that only this special group of people knows and understands.

With all of that said, it is amazing how easily you will start to throw about the lingo once you have learned in. In a previous post I mentioned that you will do it to feel as though you know and understand the spectrum...no matter how much I read or research, I don't think I will ever have enough understanding of any of this.

I thought I would put together a helpful list of terminology and its meaning for anyone to reference, so here it is. If anyone has anything to add, please let me know!

Happy Bloggin'!

Words to know to sound like you understand what the heck is going on:
Neurotypical: individuals not diagnosed with a disorder
Presents: displays, exhibits
on the spectrum: a diagnosis that falls within the autism spectrum
ASD: Autism Spectrum Disorder
OT: Occupational Therapist
IEP: Individualized Educational Program
SI: Sensory Integration