Little Heartbreaks

I want to keep this blog about working towards the solution.  Sometimes things come up that seem unique to this off-script life that I find myself in.  This happened yesterday.  A small comment that derailed my day. 

I go to yoga class on Tuesdays and Fridays.  Yoga has helped me to be an even-keeled mother, that way I can do my best for Boo.  I would like to do it more then two days week, it helps me transcend the dailiness of life and find peace.  

A mutual friend of the instructor asked me to say "hi" to Mrs. J at the next class, so I did.  Mrs. J asked how I knew Mrs. S?  I told her that we met at pre-school.  This got me into a discussion with other members of the class about; the pre-school, ages of our children and what schools they attend now.  One of the other people in the class happened to be a previous board member of the pre-school.  His children were much older and he nicely informed me that, every new horizon in his children's lifes' were all great and brought benefits and excitement.  It felt to me as though he was trying to give good-natured advice about enjoy your kid.

None of what he said was bad, it was well-meaning.  It seemed like a prototypical comment of someone with "normal" children might say.  I had nothing to say to him.  What could I have said?  That we celebrate when our kid actually talks to another person?  When he can go out to the car by himself to get the book that he left there?  

I had a small heartbreak at that moment.  It was hard to "transcend" the rest of the day.  Part of the reason was that we had a terrible time at that pre-school.  We had to take TsukiMoon out of pre-school when Boo was 3.  He ran into a teacher who clearly didn't like him and was rough on him.  Mr. TsukiMoon and I decided to have TsukiMoon leave mid-year because he didn't need to be subjected to her anger.  

That well-meaning comment caused remembrances about all the "experts/educators" that saw TsukiMoon as a problem, who didn't like him, but never suggested that there might be another issue (Boo wasn't diagnosed with ASD when he was 7 3/4 years-old).  It also brought up frustration with my lack of understanding with TsukiMoon  children in general, and that I should have been more aggressive to find answers, the frustration that lack of money made that impossible. 

At this time I thought that my kid was a great kid.  Frustrating kid, yes but lovely all the same.  Smart and capable TsukiMoon was a young child who behave just like that, a young child.  The adults who had issues with him was, well, their issue, not TsukiMoon's.

My day was completely waylaid by all this: a regretted past.  I watched Netflix for the rest of the day, a lost day.  Then because I didn't accomplish anything I dreamt last night about being in the show The Walking Dead, where I was one of the zombies.  All pretty terrible.

There was one good thing about the day besides attending yoga class, I found a new quote.  I love quotes and collect them.  

Be bold and mighty forces with come to your aid.  --Goethe

Can Reading Lead to Making Friends?

Objective:

Get TsukiMoon some friends at school.

Theory:

It is my belief that if TsukiMoon can talk about himself it means that he is understanding himself, if he has an understand himself he can then understand others.

On The Ground:

It is difficult to identify the issues that TsukiMoon needs help on.  It is easy to get the general issues; he has a challenge with social situations, but what are the parts of that?  How best do we address them.  

Mr. TsukiMoon and I have to use our high levels of observation and empathy to understand what TsukiMoon might be thinking and feeling.  We imagine how we would feel in similar situations, with similar disabilities.  It's a challenge and we are always making new distinctions.  The interesting thing is that both Mr. TsukiMoon and I excel at this, it is one of the reasons why we both excelled in our jobs.  We are sensitive to people's feelings, careful that there is no loss-of-face when delivering bad/difficult news, and why we could get the best from the people we worked with--especially Mr. TsukiMoon   It is interesting to me that TsukiMoon has such a challenge with this exact skill, but with our help he gets better.

An issue that has come up is that TsukiMoon has a really hard time understanding fiction.  He can't relate to the characters or the circumstances that protagonist finds himself in.  It is my belief that if TsukiMoon can put words around the feelings and motivations of the protagonist he can then put words around his feelings.  If he can understand himself he can better relate to others-- with the ultimate goal of having friends at school.

I expect that this will be a long process.  It took me 5 years to get him to be able to read, maybe this won't take as long as that.

Action Plan:

- Continue working with the Mrs. K, the pathologist around reading.

- Get TsukiMoon's in class reading ahead of the class so that he can have more time to absorb the text and can better relate to the text and be able to answer the questions in class.  We had TsukiMoon observed in the classroom by the Mrs. K and he was slow to write, if at all, to an assignment that was given.  We need to prep him the night before so that he has more time to think about what is needed.

- Find fiction, no-picture texts to read to him around topics that he interested in.  He is really interested in Dungeon & Dragons.  There are reams of books dedicated to this interest.  Yea for that.  Star Wars is an interest-- we also regularly say the prayer "Thank God for George Lucas."   In addition books around WW2, another interest.  Use these books to create a dialogue around interests. 

- He hates to be asked questions about the books (graphic novels-- the pictures help TsukiMoon understand the text) that he is reading because he truly can't answer the questions.  Questions like: What is your favorite part of the book?  What did the character do that was funny?  Was there any part that made you nervous?  You get the picture.  What I need to do is read these books and start to talk about what I like about them, what I think the protagonist objectives were, how they speak to my life or how I relate to them.  In Common-Core parlance: Text to Self.

If any readers have additional suggestions I would love to hear them and put them into use.

Eye Contact

Objective:

Help TsukiMoon make eye contact when he talks with people.

Theory:

Does behavior drive thought or the other way around?  For this one we are working on the behavior first, from there who knows where it will go.

On The Ground:

In July I read a article in the New York Times called, The Kids Who Beat Autism.  In that article there were several ideas that Mr. TsukiMoon and I put into action.  One was a parent who would only respond to a question by their ASD child if the child would look at the parent in the eyes while asking the question.  We did this with TsukiMoon.

It has been an exercise in consistency.  So often as parents, Mr. TsukiMoon and I rush around getting things done and just give TsukiMoon what he wants (not effective parenting in ordinary cases).  For instance, TsukiMoon might ask, "Where's My Little Pony book?"  Focused on something else, I would retort, "Ok, where did you have it last?" without looking up.  

Now I do two things: I look up and ask, "Would you ask me that while looking at me?"  

The question would repeat.  "Where's My Little Pony?"  maybe, maybe not while looking at me.

"Ok would you ask that again in a longer sentence?"  Then I would give an example of what I was looking for.  "Would you say instead, 'Mommy would you help me find my My Little Pony book?  It was last in the playroom.'  While looking me in the eyes?"

He then may repeat what I said verbatim without looking at me.  "Good" I would say, "Now would you say it again, this time look at me."  Which he would.  Obviously this all takes time, patience, and diligence.  We have only one child so we can go into this kind of detail because there are no other children wanting our time. 

Over the last five months TsukiMoon's eye contact has gotten better, perfect no, but much better.  First his eye contact got better with us.  Over time he started to make eye contact with his friends.  Part of this seems to be that he is more comfortable at his new school so general willingness to participate with people is higher.  Lastly he started to make more eye contact with other adults.  He still needs to be asked to make eye contact with us when he asks for something or tells us a story but he is ernest and willing to try.

Much of TsukiMoon's lack of eye contact seems anxiety based.  I think of this as exposure therapy, the more one is exposed to the thing they don't like the better he gets at it. Overtime he has become more comfortable.  I have mentioned before it is hard to tell what drives TsukiMoon's behavior; ASD symptoms or anxiety-- straight fear.  For both exposure seems to help him over come both/either. 

One thing that has helped with eye contact is the an idea that came out of one of his social groups.  What you look at tells someone what you think is important.  What someone else looks at tells you what they think is important.  The homework from that class was to go home and play a game; the parent looks at something, the child has to guess at what the parent is looking at and what the parent is thinking about that thing.  It's a fun game. We even play it with the cats and dog.  For instance, "what is Mew looking at?"

"At the rabbits."

"What is Mew thinking about?"

"Chicken."  (An actual answer.  I love this answer.  Recently I talked with a friend, she said that at a back-to-school night at the high school she had to write a description of her daughter.  I asked her if that was difficult.  She answered, "no," that she could do it with any of her 4 daughters.  I said that would be tough for me because TsukiMoon is in transition.  An answer like this gives a glimpse to TsukiMoon's mind and humor.  It is so subtle, clever and dry.)

This game also helps TsukiMoon understand in an oblique way that when you are looking at a person and talking, you are not only saying that the other person is important but that what he is saying is important.  It's an adroit understanding of people; importance that others and the speaker place on information that is being relayed.  Which is really the ultimate goal:  The trick; communicate effectively and listen with empathy so the other person feels listened to.

Parent/Teacher Meeting

Objective:

Get TsukiMoon the best education.  This is defined by; joy learning, engagement in school, and progress in elements of school as defined by the school i.e. learn the things taught, stay with the class, get along with peers.

Theory:

Like everything we do we work to optimize TsukiMoon's experiences with the goals; that he gains trust in himself, eases anxiety, enjoys learning.  The idea is the positive experiences in his life will set wind under his wings and help him take flight.  His last school was not enabling him to feel confident so we switched to the neighborhood public school.

On The Ground:

Good news:  Our first teacher/parent meeting at the new school went well!  Wow, for a 30 minute meeting where we heard a whole lot of good things took a lot of work on everyones part.  30 minutes of glowing reports represented; 3, 4, 5 sessions a week this summer with Mrs. K the speech and language pathologist, lots of driving Boo around, feeding him the best foods, social classes, lots of engagement by us where we stayed in constant "parent as teacher" mode to help TsukiMoon understand how to act around others.

His school divides assessment into 4 categories; best: works independently, average: progressing, below average: needs instruction, and really low as: delayed.  In the approximately 15 categories graded, we were told of; a few works independently, most assessments fell in the area of progressing, and one needs instruction.  Those grades cover; math, writing, reading, science, getting along with others, following instructions.  The area that got tagged as "needs instruction" was in decoding what he reads.  

We have created a great team around TsukiMoon   Mrs. K the speech and language pathologist addresses the decoding.  The issue is really about understanding the motivations of the protagonist and supporting characters.  He doesn't have an issue decoding words.  

We help at home with decoding by having a steady stream of books coming into the house that center on his interests at the time.  We have a great used book store that we go to every other week to find new books, which if they are not too hard, he reads voraciously.  So interesting.  I don't know what he gets from reading if he has a hard time decoding but he loves to read.  Graphic novels certainly help him understand what he reads because pictures help explain the text.

Great, all great.  We were so relieved coming out of that meeting with the teacher.  Completely different experience from the last school.  For the last two years we have been told that TsukiMoon preformed sub-par to his peers.  In first grade we were told that if we didn't put him occupational therapy they would be forced to hold him back.  One contributing factor to the bad reports, and one reason why we pulled him from that school, was that he was never happy there and was bullied; kicked, punched, head shoved up against the wall, vilified, and that is just what I saw.

Academically we are shooting for average for TsukiMoon  we would be thrilled with the middle of the pack after the awful experience with the private school.  It was the common practice for the second graders to rank the other students.  TsukiMoon would come home and say, "well at least I'm not the worst."  Second grade was too young to feel like there was a lid on what one might achieve, especially when disabilities hinder the outcomes.  That is simply not fair.  

We are addressing the academics and TsukiMoon talks about going to an Ivy League.  We are just happy that he is happy and feeling successful.  At Thanksgiving when asked how third grade was going, he responded with, "third grade is soooo easy."

Other parents take reading,writing, or even "normal" thought processes for granted along with the grades that come with them.  In our area parents even try to gain the system with tutors.  Taking TsukiMoon out of his super academic private school and putting him in the neighborhood school was key to help TsukiMoon reach his own success.

Average was almost normal/easy at this parent/teacher meeting. We have true gratitude for what looks like ordinary to everyone else is.  Yeah!  Today confirmed that our hard work, TsukiMoon's work and The Team have all been having an impact.  We don't get the tuition back for third grade at the private school, we pulled out after signing a contract, but that is quickly fading into the distance.

Supplement Therapy-- Sulphoraphane Update

T Plus 3 Weeks:

Three weeks in to the experience of the supplement, sulphoraphane.  Things are going pretty well Boo might be communicating more with others.  He is still challenged to make eye contact.  His emotions seem more even keeled, which is nice.  It is hard to know if this part of everyday ups-and-downs of any life or is due to the supplement.

The days that he gets a dose in the morning and another in the afternoon seem to go better.  The recommended dose on the bottle might not meet the number of mols administered in the study and is on the light side.

We had a tough time on Sunday, which served as a reminder to feed Boo good food regardless of the supplements he takes.  Good food for TsukiMoon is defined by the Specific Carbohydrate Diet; grain-free, lactose-free, sugar-free.  In this household that boils down to; gluten-free, dairy-free and a lot of meat, healthy meats but meats all the same.  Since Sunday I've been doing a better job of creating varied, healthy meals. 

I'll give another sulphoraphane update in 3 weeks.

[Here is a link to my earlier blog posting - 3 weeks ago.]

Games as Therapy-- Pokemon

Objective:

Teach self-regulation and practice interaction with people.

Theory:  Playing games teaches; how to win with grace, how to accept defeat and see it as a learning opportunity.  It is also about spending time with people you like, meet and make new friends.

On The Ground:

I don't quite know how TsukiMoon's interest in Pokemon got started.  In the past I have asked if he would like to read Pokemon books when we are at the used book store and the answer as always been, "no."  I believe that he must have watched an episode on Netflix one day when he sneaked some extra screen time.

He became infatuated with Pikachu.  "Pikachu is sooooo cute!  Isn't he cute?"  He started to mimicking how Pikeachu talks, a high-pitched-baby-doll voice.  The only thing Pikachu says is his name so you can interpret his wants any way you want.  From my perspective it seems like a crazy show. For a kid that is not very connected to things he shows lots of emotion for this little critter.

That good feeling quickly graduated beyond the tv show to wanting to play the game.  At the game store last weekend he talked with Miss R, who happened to be the salesperson who started the Warhammer obsession.  She informed him to the different types of decks available.  We bought two decks of cards for about $25.  He was so excited he set up my cards when we got home while  I cleaned the kitchen. 

Pokemon, oh my God did someone invent a complicated game that is tough to learn.  Boo had me watch a youtube video to help me understand the rules.  (Kids are so sophisticated with their understanding of technology and I got my first Apple Mac in 1986 when I was 16 and he is still better at all the ins-and-outs of the internet at 9 then I am.)

Mr. TsukiMoon suggested that we watch YouTube for some help.  Boo sat me down to watch a insulting introduction how to play Pokemon.  He thought the production was great because it was children teaching oafish adults.  He chortled all the way through it saying, "isn't this great?"   

We sat down on the floor and started to play.  I was just as oafish as the parents in the youtube production, I was quicly losing.  Since both his deck and mine had been set up by TsukiMoon and because I was getting my hat handed to me, it seemed that the decks were stacked.  (A little insight into me is that don't like to lose.  I share this trait with TsukiMoon )  I started to get upset.  It seemed like he was making up the rules as he went along.  To his credit he said, "I'm sorry that you feel that way Mommy.  You'll get it."

Wow did I just hear that?  So much empathy, he must really want to play.  So I stuck it out.  I did need a nap afterwards.

TsukiMoon has played a few times with me and his friends since.  One interpersonal trait that TsukiMoon needs to 

"Yeah great," I snorted.  I felt much like the dummies in the video acted.  I needed a nap afterwards.

TsukiMoon has played with me and his friends a couple of times since.  Tuesdays at the game store are Pokemon days.  We will have to go there so TsukiMoon can practice his skills, all of them.  I suspect that we will need to watch a game or even a couple of games over a couple of weeks before TsukiMoon feels comfortable enough to play.  We will get there.

Supplement Therapy-- Sulforaphane

Objective.

Help TsukiMoon have a reduction of ASD symptoms by giving the supplement sulforaphane.

Theory:

A news reported on CBS News on October 13th, 2014 of the study by lead researcher Dr. Kanwaljit Singh, of Massachusetts General Hospital for Children found positive effects of the supplement of sulphorapane derived from broccoli sprouts.  [Here is a link to his paper.]  We decided to try the supplement on Boo. 

Sulphoraphane has negligible toxicity as reported in the study.  

On The Ground:

My mother called me on about two weeks ago to tell be about something that she saw on the CBS morning news about a study where boys and young-men with ASD had a reduction of symptoms by taking a supplement derived from broccoli sprouts.  "I bet you could get it at Costco," she told me.  "Maybe this could be a cheap fix."  Everything is better if it can be a "cheap fix" for my mom.  Who can blame her?  I went to Amazon and quickly found the sulphoraphane supplement.  Could it really be that easy to find something that might promise so much?

Ever being thrifty myself, I took the free-shipping option with a extra dollar off for not needing the item immediately (an Amazon Prime option).  I guess I didn't want to get my hopes up  and seem over eager.  For about 15 bucks a bottle, we had 60 pills of hope.  

After some discussion with Mr. TsukiMoon we decided we would be willing to pay Boo to take the pills.  TsukiMoon had buy-in until he tasted the supplement.  He can't swallow pills and has a strong gag reflex to anything he doesn't like; pills, vegetables, fruit.  He gagged when he tried to swallow the pills.  Up shot-- paying him didn't work.  What to do?

My husband came up with the idea of milkshakes with the pills blended in.  He said that both his cousin and uncle had the same gag response to pills that blending them into food.  Not wild about TsukiMoon having lots of ice cream even if it is coconut or soy ice cream (he is dairy-free).  I mixed the pills with quite a bit of ice so that it would still be thick consistency but had less fat. 

Yesterday I put just ice cream with no ice, turns out ice is key.  The broccoli sprouts supplement strong bitter taste.  He got to the end and didn't finish the shake.  I asked him to finish it up, he took a sip, shivered and said he was full.  I took a sip, it was awful, such a nasty taste of bitter broccoli.  Ice helps freeze taste buds, numbs them out so they can't taste as well.  Ice from now on.

It has been about 4 or 5 days of consistently taking supplements, I'm watching for any changes.  In the study it took about 3 weeks for parents and care-givers to notice any changes.  I see some positive things like he had a conversation with his teacher yesterday.  An ordinary conversation with good long sentences and a true exchange between the two.  Then he went to his OT for an individual and was happy when she mentioned that her house might burn down if she put the project they were working on in her oven.  Ugh, not positive.

Sometimes when he shows a wide discrepancy of behavior I wonder if he feels himself change; language more elaborate, emotions even, which causes a pull back, a regression.  Possibly out of fear?  Or it could be the school lunch he had of pepperoni calzone; dairy, nitrates, nitrites, and gluten-- darn school lunch.  

Note: I will write a piece about school lunches because that has been a whole new issue since attending public school. 

I will keep you updated an any changes as we move towards 3 weeks.

In Practice:  Milkshake Recipe

1 c. Almond milk or coconut milk, unsweetened preferred

1/2 c. soy or coconut milk

1 serving of broccoli supplement.*

1 c. ice

* In the study it talked about serving size in mols.  Not knowing how to correlate that to serving size of the bottle listed as milligrams, I just went with the recommended amount on the bottle.

Halloween; Bad to Good

Objective:

Help TsukiMoon self-monitor so that emotions don't overwhelm him and bleed into his behavior.

Theory:

A gluten-free, dairy-free food plan helps TsukiMoon remain calm because his body isn't at odds with himself and he can act with more fluidity in the world.

On The Ground:

Halloween 2013; How the food plan all got started.

We live in a larger town of about 60,000 on the outskirts of a large city.  All the houses are close together so trick-or-treating can be a fruitful endeavor, much better then my experience growing up in the country where I went to 5-6 houses.  It is a wealthier town so many of the folks give out full-size candy bars.  In other words lots and lots of sweets.

TsukiMoon is not great at self-regulation when it comes to eating highly-palatable food.  He eats until he gets sick, then goes back the next day to do it again.  We try to keep tight regulation of food so he doesn't get sick.  Like anyone he doesn't like restrictions put on his food choices.  Without us realizing it he absconded with his Halloween 2013 candy.  He hid behind an overstuffed chair and ate all of his candy in two days.  It made for a terrible weekend.

He showed the more extreme symptoms of ASD; loss of words, would scream the word, "NO" at us.   He couldn't control his emotions, and would lash out us physically.  That was it for me.  I had heard that a gluten-free, dairy-free food plan helped with ASD symptoms.  We implemented it that week.

I had read that a gluten-free and a dairy-free diet has helped some with an autism spectrum disorder.  So brought all pasta and bread to the food shelter.  We threw out all dairy yogurt, cheese, replaced the milk with almond milk.  In addition all fake dyes in any food or carmel color was on the toxic list and not let into the house.  The effects where fast.  By Christmas we went to a friend's house for a party, TsukiMoon engaged in a long conversation with the mother, something that he had never done before in his life--an adult, who he considered a stranger (all adults who are not us or his teachers are strangers).  No way it would have never happened.  After that he started to engage with people we would meet at Starbucks and share with them what we were up to that day.  So much better then being afraid of everyone and hiding under tables.  The more pure the food the better TsukiMoon does.

I would like if TsukiMoon ate a paleo diet (also know as the cave-man diet; fruits, veggies, meat, nuts) because I believe grains, even gluten-free ones have an ill effect.  This is based on my reaction to grain and that I have many of the same issues of TsukiMoon around anxiety which are heightened with starches.  Being grain-free helps me regulate my emotions and to better focus.  If only TsukiMoon ate something other then carrots and apples for a vegetable or fruit.

Over the past year we have been faithful to the no gluten, no dairy with only somethings slipping through at birthday parties or peoples houses.  TsukiMoon is a different person.  He regularly talks with people, has friends, and is even-keeled.  We went to Germany and Denmark this summer.  It was too hard to maintain gluten and dairy-free, so TsukiMoon got to eat anything he like.  His actions were good for most of the trip.  I believe that he has, through this food plan has been allowed to create new behaviors, new ways of being and acting so the week and half in Europe didn't derail his new habits.

This year we participated in Halloween this year, 2014.  We went out with friends.  TsukiMoon ran from house to house up by himself or with friends.  He worked out with his friends a rotation for who got to ring the bell next, he thanked everyone he got candy from-- all new skills.  

There was some complaining before the 31st of October because he wanted to keep the candy that he collected.  I listened to his concerns and confirmed his sadness.  Mr. TsukiMoon took away the candy during the night and told TsukiMoon in the morning.  There was grief about not having any.  He looked over the house for it.  We bought him some new models for his war game, Warhammer 40K.  This seemed to help, there was still sadness, but he could talk about it and that was great.

Answer the Unanswerable

Objective:

Answer the unanswerable.  Why us?  How did TsukiMoon get this disorder.

Theory:

If I go around on this question I will suddenly understand what has no answer and some how it all will be better.

On The Ground:

Of course knowing; why us? why TsukiMoon  doesn't solve anything, doesn't help anyone.  TsukiMoon has ASD, us knowing why doesn't help him in the day, to day.  It might if the discussion happened before he was born, maybe.  We might have been able to address it, probably not.  Autism wasn't even on our radar.  But should it have been?  Probably, but we didn't ever really know what it was.

Genetics-- are they a factor?  

When we got the diagnosis for TsukiMoon our two families came into sharp relief.  Ohhhh, it's all so clear.  That's way my mom acts that way.  Maybe that is why my uncle never married.  That explains the note in Grandpa's jacket, that he carried always, had his home address on it.  Maybe it explains that cousin and his father.  Mr. TsukiMoon and I have family members who have traits that, through the lens of autism, seem like autism.  Then everything looks like a nail when you have just been given a hammer. Anyway we probably come by this naturally.

For my side of the family my uncle life makes more sense now. He was a shut-in, who hoarded his money, and wouldn't let anyone into his house.  My mother, who might be on the spectrum as well, always said he was smart.  What I know is he was quick wit, well educated, reading and retaining most of what he read, always consuming more information, and could hold a grudge.

He was also a adult never really able to act in an adult way.  He even looked like a big baby; soft and doughy.   He was dangerously jealous of his mother's affection not letting his sisters visit their mother, standing guard over the door of the house he shared with his mother.

After my grandmother's death my mother wouldn't visit him without my father because she was afraid of him. When he died we found 10 firearms in the house. The question was: did his challenges start with an initial autism type brain exacerbated anti-social behavior by ill treatment by the heavy hand of his father?  Or in plain parlance was he just nuts?  Who's to know?

I want to make it clear: autism comes in all shapes and sizes and that my uncle's issues weren't necessarily autism related.

My uncle seemed to be a disappointment to his father.  There couldn't be two more opposite people my grandfather was an extreme extrovert.  He made friends everywhere and like to be the center of attention.  What he got was; one normal child in my pretty aunt, his son, and my mother who might be a savant but has weak understanding of people.  I think it was hard on Grandpa, two super intelligent kids that were introverts.

On my husband's side his grandfather was a scientist/engineer but couldn't find his way home at the end of the day without the help of the address that he kept in his pocket.  One of his sons' has a deadpan demeanor; stereotypical, introverted scientist.  His son had crippling anxiety and couldn't get out of his own way.  

All these stories are sad, interlaced with pain of expectations, disappointments, and no or late treatment.  Then add the weight of parents who wanted more then their children could provide and it was too much for many.  Was the impedes underlying autism?  Know one will ever know.  Before TsukiMoon's diagnosis we never looked very closely at these extended family and certainly attach a possible common issue to them.

TsukiMoon's diagnosis freed me to let go of hopes and dreams for TsukiMoon's future.  Any pressure I might have been put on him was taken away.  TsukiMoon was then free to pursue his authentic self.  Him and I are more loving and accepting for each other.  Me because I don't have secret wishes for TsukiMoon that interferes with unconditional love.  TsukiMoon because he has a mother who accepts him, he can be more relaxed.  

On the other side the diagnosis has left me with, at times, a crippling loss. I didn't have someone to pin my solutions on.  I hate to say it, save me.  I was now  in charge of my own outcome now, own happiness.  Obviously a good thing.  To expect a anyone to solve the life of another is too much to ask of anyone, especially to ask a child.  ASD has been a gift for our family, even for TsukiMoon   He has two parents that; facilitate his interests and are accepting, love him unconditionally.  For us, we too have been freed, we can now live an off-script life.  No keeping-up-with the Jones for us.

Nothing about this experience with TsukiMoon has been easy but where would he and we be without the diagnosis?  Following the broken path of ancestors?  Our family of three, all get to make the most of this life.  TsukiMoon has excellent parents who love him for just who he.  What more could any of us want more?

Friendship is Magic

Objective:

Have TsukiMoon get and keep friends.

Theory:

The idea is there are universal rules of interaction between people that everyone can learn and then practice.

On the ground:

This is TsukiMoon's biggest issue: friends; having/keeping.  This is the area where the ASD shows up strongest.  He has difficulty with understanding the rules of play.  He is happy to be called the "bad guy" to everyones play because he gets to be part of the play, then doesn't recognize with the group play has switched and he then becomes everyones true bad guy.  Which opens him up other kids feeling justified to be abusive, both with words and fists.

This is the one of the two reasons that we pulled TsukiMoon out of private and put him in public.  Boo is part of a "protected class" of people.  The burden on the public school to protect him from such behavior is higher because it takes money from the federal government.  With private schools it is more difficult to figure out if they receive grants or help from third parties who have received federal money.  When we told the private school that we had to move Boo to give him the protection of the law they understood.  They then said something surprising; "Here at _________ we don't talk about bullying."

Ok, good to know.

In first grade I noticed many times when TsukiMoon was getting punched and kicked by other classmates.  To protect him from these abuses one of the things I did was put him in social class because it was clear that he didn't understand his part to cause the maltreatment.  I have since kept him in social groups.

Social groups have helped TsukiMoon learn self regulation and rules for engagement.  He has learned the turtle technique, how to retreat when emotions start to get too much and use calming breaths to self regulate.  You can't make a friends if you get frustrated and lash out. 

TsukiMoon doesn't always think it is fair that it is up to him to always walk away and not react to bad behavior of others and it's not.  I too get frustrated with the all the hoops TsukiMoon has to jump through where other parents brush aside the bad behavior of their children as ordinary part of life.  One of our saying that we have in our house to help us through and have taught Boo, " Life isn't fair.  No one said it was going to be fair."  This helps all of us, TsukiMoon  Mr. TsukiMoon and me to pull ourselves up by the preverbal boot straps and move on.

In the public school things have gone much better.  He is the new kid with no bad history with these kids.  The classes are larger and there are four classes to grade instead of two.  Plus I have to say it but there is another kid with autism and ADHD that collects the ire of his class, providing some cover for these early months while TsukiMoon gets his feet in the new school.

Two weeks ago we put TsukiMoon into an occupational therapy (OT)/social group, so that he can work on fine and gross motor with a child with similar issues and learn self regulation/making friend techniques.  They have to; work together, compromise, learn to talk, and enjoy each other.  It happens that that class is followed the next day with an individual session with the same OT therapist, Mrs. E.  

Mrs. E is the first therapist that we brought TsukiMoon to when things started going poorly in 1st grade.  The private school that we had been sending Boo too, told us that had to send TsukiMoon to OT or else they would need to hold him back at the end of 2nd, grade. Which made me three kinds of ticked because it was February of 1st grade.  How could they make such a statement about something that was a year and half away?  At this point we didn't have a diagnosis of ASD.

What we did was find an OT, Mrs. E, and had Boo evaluated.  Mrs. E from her evaluation and starting OT with TsukiMoon   She recommended that we had Boo further evaluated.  I was so mad at the school that I wanted to get every single evaluation that could be done so that the school could not blame TsukiMoon for the issues at school and in defacto blame us for his behavior.  They kept asking if there were problems at home.

Mrs. E very nicely told us whatever the outcomes from the evaluations the thing to remember was that it was about finding the best help for TsukiMoon   When the diagnosis of ASD came in this point help us focus pass the grief and find all needed therapies to  maximize and target the important needs/disabilities.

So that is the background to Mrs. E, who we have now had a 20 month relationship with.  Over that 20 months with lots of intervention by us, therapists, and work by TsukiMoon   Mrs. E has complemented us on what a different kid Boo has become; better eye contact, communication with her about; stories, school, life at home.  So much change that she encourages us not to tell anyone that TsukiMoon has a diagnosis of ASD because most folks wouldn't notice the slight inconsistencies in behavior.  That's great.

That's until two weeks ago when she started up this social group with another boy.  After our individual session the day following the group class, she said that having TsukiMoon in social groups was important because that's when she really notice the ASD.  

Ahhhh yes :-(.  We know that this is a case but it still is disappointing to hear because there is still much work to do.  We have knocked back many of the educational issues with the help of the speech and language pathologist (we have been going to for a little over a year).  TsukiMoon sees twice a week during the school year and this summer 3, 4 and sometimes 5 times a week this past summer.  He now tests in the middle of his class.  Great we will take average any day of the week.

So what to do?  ASD at the heart of it is a social issue.  I understand the people who say that these children should be accepted for who there are and and not asked to change.  For TsukiMoon he really wants friends.  That was the main problem at the private school; he wanted friends but was doing a shit-poor job of getting them.  As parents we have to help him be happy in the world.  He was not happy without people to play with.

 Our main focus this year in third grade is to help him find his strengths and learn how to be a good friend.  We are looking for strategies that teach; empathy, kindness, respectful touch (not too hard), setting and keeping reasonable boundries, communication with peers?  We have a number of things we do that target this.  Compaired to the educational issues TsukiMoon had it is hard to teach the desire to put others before yourself and create cooperative play?  Will we get "all the way there," on this issue, I don't know we have a long way to go.

Bronies

Friendship is Magic.

Objective:

Have TsukiMoon get and keep friends.

Theory:

The idea is there are universal rules of interaction between people that everyone can learn and then practice.

On the ground:

Netflix has amazing selection of choices.  Much to my shame I watch too much of it.  I couch this addiction as not the best adaptation to the stress.  Recently I watched a documentary called Bronies, an introduction to the world of My Little Pony and the boys and men who are fans; Bro mixed with the word ponies-- Bronies.

In the movie the documentarist follows many individuals as they talk about their love of My Little Pony and why the story speaks to them.  One of the stories was about a person with ASD making his way to a Brony convention.  He planned his whole trip, went by himself on a train and met lots of new people at the convention.  All of this was a challenge for the young man but ended up being a super positive, confidence-building experience.  From this I decided Boo needed to watch My Little Pony.

It was great, TsukiMoon actually liked it.  So much better then Star Wars: Clones which we no longer let TsukiMoon watch.  Too much violence for a kid for a kid who uses too hard of a touch in tag and the like.  I sold the show as really a lesson about friendship and that was something that everyone needed to learn about, including me.  We watched the shows together.  Luckily it is entertaining, I can sit through it and enjoy it.  

Each episode of My Little Pony created by Lauren Faust is funny with a moral ending on how to communicate and treat ponies to keep them as friends.  In the first episode of the first season the main character, Twilight Sparkle, has little interest in other ponies or the desire to be friends with them.  She is given the assignment by the princess of Ponyland to stay and live in Ponyville to learn what makes friendship magic.  Twilight does a poor job initially and wonders the value of friends, finding all communication with others takes her away from her books.  Interested in learning though, she decides that friendship is just one more thing to learn about, much like learning from her books and decides that she will stay and learn more about friendship.  Does this sound like a autistic pony?

TsukiMoon loves the stories and reads the books and graphic novels that accompany the licensed characters.  He reads the books repeatedly.  When he wants to watch the show he will say, "come on Mommy, we need to learn about friendship."  

Has this helped TsukiMoon become a better friend.  There is some belief that children absorb the morals of the books and media they see.  One of the reasons why we keep tight controls on Star Wars: Clones.  Hard to know if it My Little Pony helps, but it does no harm.

Note:  If your child likes Star Wars we like the show Star Wars: Rebels which is about the beginning of the resistance movement and the the characters; made up of two 14 year-olds, mother and father figures, a cantankerous droid, and a older brother type figure.  The violence is more silly.  Each episode is about the crew of the Ghost giving aid to people who are negatively effected by the newly created Empire.

Games as Therapy

Objectives:

• Help our son, TsukiMoon, feel comfortable enough to talk with strangers and people in general.

• Create skills that give him confidence in himself. 

Theory:

I call games, "life lite," meaning the skills learned in games; self control, learning how to lose, good sportsmanship, how to communicate translates to competence in real life.  Playing games will draw TsukiMoon into the world of people; where he understands, is willing to learn from, and enjoys others.

On the ground:

So much of our experience as parents of TsukiMoon is about going outside our comfort-zone and stepping up to the plate as parents to help our son overcome his disabilities.  We don't expect to hit any home-runs, unless a happy child is a homerun, which we thing is.

Today it is my husband's turn to be uncomfortable to help facilitate TsukiMoon's desire to play a game called Warhammer.  A quick description of Warhammer is part of a class of games called  "battle gaming" games.  It is played with figurines and complex set of rules.  These are not computer games so they fill two of our desires for TsukiMoon  interaction with others and through playing games with others learn how to modulate his behavior.  

In the book “Life, Animated: A Story of Sidekicks, Heros, and Autism” by Ron Suskind talks about, “finding a way in.”  Meaning find the thing your child is drawn to which will draw him out of himself, to give the child a context to communicate with the world.  For the author's son it was Disney movies.  For our son it has been World War 2 and weapons.  This posed a problem for us, particularly my husband.  My husband's history is his best friend was shot and killed in high school.  It happened at a home shooting range under the supervision of an adult.  My husband, Mr. TsukiMoon  is adamant not to have weapons in the house especially with a child who has a fragile understanding of empathy to have or handle one, wether it be a Nerf weapon or anything else.  

Personally I believe this fascination with war and weapons for TsukiMoon stems from anxiety and fear.  He feels that he needs to protect himself.  He perceives the world as a dangerous, scary place.  For TsukiMoon his anxiety is, in some cases, more a hinderance to life then his ASD.  

Our goal as parents: help him feel comfortable and safe in the world.  TsukiMoon clearly wans to play with weapons.  What to do?   Solution: play Warhammer, X-Wing, with friends, at game stores, in tournaments so he feels comfortable with people and isn't so afraid.  The effects of the weapons are make-believe.  Unlike hitting your friend with a Nerf bullet, you play your friend in a battle with strategy in a fantasy world, much like chess.

It has been out side of our comfort to learn and play these games but it has also been beneficial.  Mr. TsukiMoon needed an outlet from a long work hours and lots of travel.  He needed a hobby that had nothing to do with work.  We have embrace TsukiMoon's desire to play these games.  We have met lots of nice people who are willing to talk to TsukiMoon.

TsukiMoon never wants to step out the door of our house for anything.  His first answer to, "do you want to ______?" is "no."  But we do it anyway because it is important to "stretch" TsukiMoon's comfort level.  Mr. TsukiMoon will say to me in private, "I don't know why I do this and then I remember.  TsukiMoon changes, normally shy he goes up to these adults and starts to talk to them about their shared interests.  It's amazing to see the difference.  To watch him open up."

Mr. TsukiMoon is concern because TsukiMoon doesn't seem to know what he is good at.  "When I was his age I knew what I was good at," Mr. TsukiMoon told me.  These games help create skill and therefore confidence. 

TsukiMoon gains skill by assembling the many miniatures and their vehicles.  The sets come in llittle pieces that need to glued together and painted.   All the production to create the characters plus learning the extensive codexes of rules has help TsukiMoon gain confidence in himself, even among adults. This is where the ASD in  TsukiMoon shines.  His ability to memorize the large amount of rules is stunning. 

Many of the interventions we do with TsukiMoon are really “time on the pond.”  We work every week to stretch in areas of his discomfort so that he can learn he is safe, then he learns to use his voice.  It's “exposure therapy,” the more he is uncomfortable, in gentle ways, and survives the more likely he will thrive.

Slow to go Fast

Have you heard of the phrase, "Go Slow to Go Fast."  It means take time to build a strong foundation so that when it's time for production/output, it will be streamlined, powerful, and fast. This is what we did with our son yesterday. 

Yesterday we made it formal. We officially took TsukiMoon out of his rigorous academic private school so that he can attend public. No easy decision because; transitions are tough for him, he has to make to make new friends, and go away from friends he's know for 3 years (K,1st, 2nd), and as parents we signed a contract to pay a tuition that we won't get the benefit of. 

We started this decision back in November, 2nd grade, when We had TsukiMoon observed by a psychologist.  1st grade didn't go well and we wanted to know why.  On the day she observed, TsukiMoon actually approached her, a stranger, and asked for help because he needed help with the boys from his class. His classmates had taken sticks, pretended they were wands in "Harry Potter" style, and used them to cast the spell of unhappiness on TsukiMoon  It was heartbreaking to hear about and concerning that he went up to a stranger, especially since he he had a fear of strangers, to ask for help.  It was a break down on many levels, even though we were happy that he asked for help from someone. 

The psychologist felt we should take TsukiMoon out of the private school immediately and put him in public where they have the resources to facilitate play for kids like TsukiMoon  Plus she felt strongly that he couldn't, shouldn't have to take hits on his  person, that he couldn't stand up to it and thrive. 

Right or wrong we didn't take him out of the school and worked hard to create a good year for him. He ended up having a dynamic academic year and created a few friends.  I continued to noticed him being maligned by his classmates though and was concerned. They would criticize him for his fear to do physical feats that other boys could do easily or out-right tease and attack him and then laugh about it with other classmates. A problem, but not our biggest concern. 

Academically things ramp up in 3rd grade, the grade he is now.  Third grade is about reading to learn and writing to express ideas. Both a challenge for Boo. When he was tested for IQ and academics last year he ranked 97% for  vocabulary knowledge but 3% for reading comprehension. Killer if 3rd grade starts to reflect your grasp of how language is structured and how ideas are expressed.  He has natural skills, but not at the level of his classmates as far as the physical act of writing and needs to learn very specific rules around sentence creation. Basically his disabilities are getting in the way of his gifts. Our feeling to slow down elementary school to create a solid foundation.

His evaluation by a psychologist, occupational therapist (OT), and educational specialist didn't turn out conclusive results so they asked us to have Boo evaluated by a speech and language pathologist (SPL). It was after her evaluation that he came up with the diagnosis for autism spectrum disorder (ASD).  A tough day when we heard the diagnosis, but a day that ramped us up into high gear. Fortunately for us the OT, who he was first evaluated by who suggested that he have him further evaluated, couched the suggestion of further tests as, "think of it as finding how best to help TsukiMoon learn, regardless of what is found out."

It has been the SPL who has had the most impact on TsukiMoon  partly because he sees her the most and because communication is his biggest challenge. After her evaluation we started sending TsukiMoon to her twice a week, 3 times a week during the summer.  Luckily he is a fast learner so he is a joy for her to teach.  After 6 months with her she told us that he would not test today as he did when she first met him.  She covers all the important things that will be covered in third grade; reading comprehension, how to write a sentence, structure a paragraph, to a full-blown essay-- she is excellent at her job.  Which brings us to the value of "Go Slow to Go Fast."  TsukiMoon needs more time studying and doing homework practice on his struggles so that middle school can go well.      

Back in October/November 2013 when we got the 411 on TsukiMoon the clinicians where impressed with how fast we were able to take the news, process it, and rapidly take action. They reiterated  several times that a lot of parents decide to put off doing anything because the child is young and could grow out of the issues that caused concern, then when the child got to middle school with no intervention, faced an uphill battle. None of this has been easy and we questioned the diagnosis as well. We easily understand the viewpoint of those parents, but we chose the path of strong intervention. 

We chose help for two reasons; TsukiMoon was clearly unhappy and embarrassed by how he preformed relative to his peers and that just wasn't ok. The other reason and the reason for articles and starting a blog, is that my husband and I feel like we are running against a clock. A clock where TsukiMoon's brain becomes more and more locked as he gets older. Where instead of undoing 2, 3, or 4 locks there are many to figure out and access the correct key. 

I should say here that we have seen children on the spectrum who clearly don't care about peers, don't have strong reasons to create and keep friends, and preform happily unaware of social expectations. Maybe if we had that kid we would approach this whole thing differently. We have the child who wants; playmates and then makes his friends mad by acting inappropriately, becomes sad and embarrassed, a child who wants to do well in school but can't figure out how, a child who is uncomfortable to talk but has a lot to say.  We had to something. This is our job as parents. 

We will do and find whatever works.  

I want to make a note here that we fully expect TsukiMoon (not his name) to embrace his challenge. We want him to write his own history unburdened by his past, for that reason I don't want either mine or his name public. People have told me, not knowing what our challenges as a family are, "autistic children scare me," "I hate all the autistic kids in school." Nobody needs this as a legacy.